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AN INDEPENDENT SUPPLEMENT BY MEDIAPLANET TO THE NATIONAL POST
BRAINThe Inside Story
AN EXHIBITION
LOCAL SUPPORTING SPONSOR MEDIA PARTNER
KNOWLEDGE PARTNER
Brain:The Inside Story is organized by the American Museum of Natural History,
New York (www.amnh.org),in collaboration with Codice,Idee per la cultura,Torino,Italy
in association with Comune di Milano – Assessorato Cultura,Italy;Guangdong Science
Center,Guangzhou,China;and Parque de las Ciencias,Granada,Spain.
OUR PREMIER PARTNERS
NEUROLOGICAL CONDITIONS
brainhealthinfo.ca
UNDERSTANDING THE SCIENCE
BEHIND THE BRAIN
Featuring
NEURODEGENERATIVE
DISEASES
Finding a cure for
Alzheimer’s and Parkinson’s
EPILEPSY
Breakthroughs and
alternative
treatment options
MULTIPLE
SCLEROSIS
Patients
share their journeys
Mediaplanet had the chance
to talk to Jason Silva, the
host of National Geograph-
ic’s hit series, Brain Games.
Here’s what he had to say
about human creativity,
futurism and how we can
extend the boundaries of
our minds.
Mediaplanet In 2011, you
became host of National
Geographic’s award-win-
ning show Brain Games.
What is the premise of the
show?
Jason Silva Brain Games is kind of
a pop-science reality series that uses
interactive experiences — cogni-
tive optical illusions and participa-
tory games — to teach people about
their brains. The games function as
devices that highlight the shortcom-
ingsinhowweperceivereality.Every
time you play along as you watch,
you’re experiencing these holes,
these lapses inyour perception.
Most people take their percep-
tions of reality for granted. People
think they have some kind of tan-
gible experience of the world. But
the reality is that they don’t. So es-
sentially the show uses these games
to teach that to people.
MP How do the games high-
light our shortcomings in
perception?
JS The games are meant to induce
curiosity in people. And the first
way to induce curiosity is to give
people a sense of wonder. We make
people question the things theytake
for granted — particularly their per-
ception of the world. Every episode
looks at a different theme and how
that theme plays out in the brain.
We look at things like fear,creativity
and imagination.
I always tell people that the first
step towards re-engagingyour brain
is to step out of your traditional pat-
tern of thought. And instead,expose
yourself to new novel stimuli. Ex-
perience something new. This is the
way to engage the brain.
MP You often talk about
actualizing human potential.
How can we access that
potential?
JS I think that for a lot of us,the on-
ly thing standing in our way is our-
selves. That’s why I’m really inter-
ested in flow states — moments of
pure virtuosity.
Creative flow states are associ-
ated with elite athletes when they
exceed their potential, and with
jazz musicians and freestyle rap-
pers when they’re in the zone.
When you get into these creative
flow states the part of the brain
that’s responsible for self-con-
sciousness goes silent.
This is just a reminder that a lot of
the time,our limitations are self-im-
posed. And so a way of challenging
our limitations is to put ourselves in-
to situations that induce these flow
states and silence our inner critic.
BENJAMIN CHACON
editorial@mediaplanet.com
MP How do you exercise your
brain personally?
JS I try to expose myself to novel
experiences: meet new people, read
new books, travel when I can, go to
museums,expose myself to challen-
ging and different things.I flood my
body and mind with new experien-
ces.Givemenewstufftoprocess.Give
me a hit of bewilderment; of wonder-
ment.That’swhat gets me excited.
MP What got you interested
in understanding the sci-
ence behind the brain?
JS Knowledge is addicting. Hu-
mans get a hit of dopamine in the
brain whenever we’re exposed to
novel stimuli. It’s why human be-
ings are such adventurous crea-
tures. We have an insatiable urge
to understand, to question, to de-
construct what is fascinating. And
I really feel that. I wake up in the
morning and I want to find some-
thing new or different that will get
me excited.
Jason Silva, host of National Geographic’sBrain Games,shareshis
knowledgeofthehumanmindandencouragesCanadianstochallengetheirs.
I suppose that’s where my in-
terest comes from. As long as I’m
growing, I’m not ending. As long
as I’m expanding my horizons, I’m
not diminishing them.
MP What is the goal behind
your MS Visionaries
initiative?
JS MS Visionaries, created by Bio-
gen Idec with Yahoo Health,is a cam-
paign that celebrates passionate in-
novative visionary individuals who
are working to make people living
with MS lead better lives.They’re try-
ing to help and alleviate some of the
difficulties associated with MS out of
the kindness of their hearts.
Basically the campaign is meant to
beacelebrationofthosewhoarelend-
ingtheircreativityandeffortstohelp-
ing others who are facing certain dif-
ficulties living with MS.It’s a celebra-
tion of the human spirit and human
capacitytoovercomeboundaries.
PHOTO:MILLERMOBLEY/NATIONALGEOGRAPHICCHANNELS
AN INDEPENDENT SUPPLEMENT BY MEDIAPLANET TO THE NATIONAL POST2 · BRAINHEALTHINFO.CA
CHALLENGES
5
NEUROLOGICAL CONDITIONS
FIRST EDITION, DECEMBER 2014
Publisher: Sonja Draskovic
Business Developer: Garrett O’Neill
Managing Director: Joshua Nagel
Production Manager: Laura Shaw
Lead Designer: Matt Senra
Designer: Mishelle Menzies
Contributors: Benjamin Chacon,
Brain Canada, D.F. McCourt,
Joe Rosengarten, Joyce Gordon,
Kimberley Fehr, Ontario Science Centre,
Michele Sponagle, Randi Druzin,
Ted Kritsonis
Send all inquiries to
editorial@mediaplanet.com
Photo Credit: All images are from
Thinkstock.com unless otherwise
accredited.
Distributed within:
The National Post, December 2014
This section was created by Mediaplanet
and did not involve the National Post or its
Editorial Departments.
Breakthroughs in
epilepsy treatment
EDITOR’S
PICK
■■ ONTARIOSCIENCECENTRE.CA
■■ MYBRAINMATTERS.CA
■■ BRAINCANADA.CA
■■ CYNAPSUS.CA
■■ BRAINCAMPAIGN.CA
■■ WESTONBRAININSTITUTE.CA
■■ KALGENE.COM
■■ EPILEPSY.CA
■■ GENZYME.CA
■■ BIOGENIDEC.COM
FOR MORE ON
NEUROLOGICAL
CONDITIONS FROM
OUR PARTNERS
Mediaplanet’s business is to create new
customers for our advertisers by providing
readers with high-quality editorial content that
motivates them to act.
Mapping Connections
An understanding of neurological
conditions in Canada
Vist us at
www.MyBrainMatters.ca
Production of this advertisement has been made possible through a financial contribution from the Public Health Agency of Canada
Scan above to download a copy
of the Mapping Connections report
VISIT US ONLINE FOR
EXCLUSIVE CONTENT AT
BRAINHEALTHINFO.CA
MEDIAPLANETCA
Landmarkstudyofbrainconditionsin
Canadasetsstageforresearchtoaction
T
he brain allows us to think,
move,talk,feel,smell,hear,
and see. It connects to our
heart and tells it to beat. It
connects to our arms and legs and
tells them how and when to move.
But what if these connections are
slow or broken?
Alzheimer’s disease, cerebral pal-
sy, epilepsy, multiple sclerosis, and
Parkinson’s disease are a few of the
more than 1,000 identified brain
conditions. Brain conditions affect
individualsofallages, andestimates
suggest more than one in three Can-
adians live with at least one of these
by brain conditions, marking an un-
precedented level of collaboration
within the brain community. In Sep-
tember 2014,the Government of Can-
adaandthebroaderbraincommunity
celebratedtheconclusionofthisland-
mark study when Canadian Minister
of Health Rona Ambrose released the
study report,Mapping Connections: An
understanding of neurological conditions
inCanada.
In unveiling the report, Minister
Ambrose said, “This is an important
base of information needed by gov-
ernments, health charities, health-
care providers, and communities to
ultimately help improve the lives of
individuals living with their condi-
tions,theirfamilies,andcaregivers.”
Mapping connections
Key findings included: individuals
living with a brain condition share
many of the same functional impacts
and needs, regardless of diagnosis.
Canadians living with a brain condi-
tion typically use more health care
services than those without a brain
condition, or even those with other
chronicconditions.
Mental health conditions,such as
depression and mood and anxiety
disorders, are more than twice as
common among people with brain
conditions than the general popula-
tion. Caregivers supporting people
with a brain condition are twice as
likely to report distress compared to
other caregivers.
Bringing research to action
As Canada’s population grows and
ages,more people will be living with
brain conditions and experiencing
severe disability. Within the next 15
years, in the population over the age
of 65, there will be at least twice as
many people living with Alzheimer’s
disease and other dementias,cerebral
palsy,epilepsy,multiplesclerosis,Par-
kinson’s disease, spinal cord injury,
andtraumaticbraininjury.
The new evidence generated by
the study, combined with a general
increase in awareness, will enable
governments and other key stake-
holders to take action to reduce the
impact of brain conditions in Can-
ada. This includes addressing re-
maining knowledge gaps, trans-
forming policy and programming,
and supporting the uptake of suc-
cessful innovations.
Let’s build on the studytogether and
move research to action. Help us by
joiningtheCanadianbraincommunity.
JOYCE GORDON
editorial@mediaplanet.com
Joyce Gordon
CHAIR, NEUROLOGICAL HEALTH
CHARITIES CANADA; CEO,
PARKINSON SOCIETY CANADA
The brain is the most critical
organ in the body, but the
least understood.
As the lifespan of Canadians increas-
es,so does the incidence of age-relat-
ed brain diseases. More than 15 per-
cent of Canadians 65 and older are
living with cognitive impairment
including dementia, and this figure
is expected to double in the next 20
years. The current economic burden
ofneurodegenerativediseasesisesti-
mated to be $33 billion peryear.Brain
and mental health disorders, which
alreadyaffectoneinthreeCanadians,
are the major Canadian health chal-
lenge of the 21st century.
The good news is that our under-
standing of the brain, in health and
disease,is accelerating,thanks to re-
search. Ninety percent of what we
know about the brain was discovered
inthepast20years.Forexample,com-
monmechanismsseemtobeinvolved
in disorders that, on the surface, ap-
pear quite different: defects in sig-
nal transmission from one nerve cell
BRAIN CANADA
editorial@mediaplanet.com
to another may underlie both schizo-
phreniaandautism.Wearebeginning
to realize that bacteria in a mother’s
intestines can have a profound effect
on the development of the fetal brain,
possibly setting the scene for men-
tal illness manyyears later.Never has
there ever been a more exciting and
fruitfultimeforbrainresearch!
Canada leading the way
Fortunately,Canadian researchers are
highlyproductive,distinguishedbythe
qualityoftheirwork.Overall,Canadian
researchers rank fifth in the world for
thehighqualityoftheirbrainresearch.
Canadianscienceranksfirstinpainre-
search, second in neuroimaging, and
thirdinmentalhealthresearch.
Finding solutions to brain and men-
tal health challenges has become a
global priority. National and inter-
national collaborations like the US
BRAIN Initiative and European Hu-
man Brain Project have been formed
toacceleratethepaceofbrainresearch,
employing new approaches involving
the fusion of genomics,sophisticated
imaging techniques, and computer
simulationstoobtainacompletebrain
“wiringdiagram”.
Canada is addressing this chal-
lenge through participation in the G7
Global Action Against Dementia in-
itiative and investing in a national
consortium to tackle neurodegener-
ative disorders of aging. In 2011, the
federal government established the
Canada Brain Research Fund, which
willmatchupto$100millioninfunds
raised by Brain Canada and its part-
ners, to invest in research that is fo-
cusedonoutcomestobenefitpatients.
Navigating the journey from dis-
coverytobetterdiagnosis,treatment,
and prevention of brain disorders
will require sustained funding and
greater collaboration to break down
silos and leveraging insights across
all disciplines.Changes in policy are
required to speed the translation of
research into new products and ser-
vices through collaborations be-
tween academic researchers and
industry, encourage uptake of the
most promising innovations into
the health care system,and increase
awareness of what Canadians can do
to maintain their own brain health.
Unlockingthemysteriesofthebrain
will improve health and socioeconom-
ic well-being, and provide striking in-
sights into what it means to be hu-
man.Canada is well positioned to be a
stronger leader and global partner in
exploringthisultimatefrontier.
HOW CANADA’S REMARKABLE RESEARCH
PROVIDES NEW HOPE FOR BREAKTHROUGHS
‘MAPPING CONNECTIONS’
REPORT LAUNCH GROUP
Canadian Minister of Health Rona Ambrose (centre)
and NHCC Chair Joyce Gordon, to her right,
officially unveil the report of the National Population
Health Study of Neurological Conditions.
PHOTO: NEUROLOGICAL HEALTH CHARITIES CANADA
conditions. Brain conditions are
the leading cause of disability in
Canada and can place significant
demands on family, friends, and
caregivers.Most worsen over time,
and while research is making prog-
ress and treatments are available
for a growing number of brain con-
ditions, the majority of conditions
still have no known cause or cure.
Collaborating for a cause
Until now, very little information
was available on the scope of brain
conditions in Canada as well as the
impact and cost of these conditions
on individual Canadians, families,
healthcaresystems, andsociety.The
Government of Canada and Neuro-
logicalHealthCharitiesCanada(NH-
CC),a coalition of 24 health charities
representing thevoice of individuals
and families impacted by brain con-
ditions, agreed to work together to
improve the Canadian understand-
ing of brain conditions. From 2009-
2013,with a $15 million investment
from the Government of Canada,
the National Population Health Study
of Neurological Conditions became the
largest and most comprehensive
study of brain conditions ever con-
ductedinCanada.
The study involved 130 research-
ers and 177,000 Canadians affected
“Ninety percent
of what we
know about
the brain was
discovered in
the past 20
years.”
PAGE7
NEWS
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-
-
TSX: CTH OTCQX: CYNAF www.cynapsus.ca
Restoring Movement with Ease
Cynapsus is developing products to manage OFF episodes
associated with Parkinson’s disease. OFF episodes are a
complication of Parkinson’s disease that leave patients
rigid and unable to move and communicate.
Cynapsus. Restoring Movement with Ease.
P
arkinson’s is most
widely known as a
neurodegenerative
disorder that leads to
uncontrollable shak-
ing and tremors, and while treat-
ments have helped those liv-
ing with the disease, treating the
symptoms with new drug ther-
apies may offer some hope.
The Parkinson’s Society of Canada
projects that up to 200,000 people in
the country will be living with the
disease, double the number cited 10
years ago. Part of
the reason for
the in-
crease is Canada’s aging population,
since Parkinson’s usually begins be-
tween the ages of 50 and 65.As many
as 5-10 percent of patients are under
40; this is a unique condition called
Young Onset Parkinson’s.
Hard to diagnose
There is currently no cure, despite
ongoing research and development,
and the onset of the disease is still
not fully understood because it is al-
so difficult to diagnose early. What
is known is that it’s caused by dying
neurons in the region of the brain
that controls movement.This makes
symptoms, or “OFF episodes”, gener-
ally unpredictable,saysAnthony Gio-
vinazzo,President and CEO at Cynap-
susTherapeuticsInc.
“It’s a serious rigidity where
it’s almost like a complete im-
mobilization. Patients end
up having to stand, sit, lay
down or be somewhere
near a wall, making it extremely
difficult to be able to move or talk
or do things they normally do,”
says Giovinazzo. “We’ve had pa-
tients tell us of not being able to
drive, go golfing, or even able to
work because of these episodes.
The real danger is the threat of
freezing up, falling, and hitting
their head or breaking a hip.”
Unpredictable ‘OFF’
episodes
OFF episodes are triggered bya lack of
dopamine in the brain and are broken
down into four types.The most com-
mon among them is morning akin-
esia, where patients awake with
symptoms after having no treatment
overnight.Theinitialmorningdoseto
offset that tends to take 30-120 min-
utes to kick in, which makes it the
mostdifficultepisodetotreat,hesays.
Other episodes that can prove
problematic are when treatment
wears off, and the unpredictable
OFF fluctuations that can occur
at any time during the day or dose
cycle. Giovinazzo believes this is
particularly important to note be-
cause Parkinson’s patients will
eventually suffer from all of them,
and their effects can be residual,
leading to anxiety,depression,and
a sense of loss of control.
Future efforts
In Canada, there are no approved
medications for the treatment of OFF
episodes. In most of the world, the
most effective treatment requires a
syringe injection, usually adminis-
teredbyacaregiverorrelative.
“Cynapsus is actively pursuing
the development of new medica-
tions that will help manage OFF
episodes in with a delivery sys-
tem that is easy to use,” says Gio-
vinazzo.The development of medi-
cations that are not a burden to
take and act effectively are import
to the patient with Parkinson’s
disease. Our efforts are focusing
on making that a reality.”
TED KRITSONIS
editorial@mediaplanet.com
InnovationsinParkinson’stherapy
“The Parkinson’s
Society of Canada
projects that up to
200,000 people in
the country will
be living with the
disease, double the
number cited 10
years ago.”
PARKINSON’S
FACTS
Parkinson’s disease is a chronic progressive neurological disorder that is life altering.
The symptoms include tremor, rigidity, slowness and stiffness of muscles; impaired balance and difficulty
with walking; loss of volume and clarity of speech; tendency to shuffle when walking; handwriting difficulty.
 Nearly 100,000 Canadians have Parkinson’s
disease with approximately 5,500 new cases
diagnosed each year in Canada.
 Brain disease and disorders (like Parkinson’s
disease) will surpass cancer and heart disease as the
leading cause of death and disability to Canadians
by 2040 yet at present there is no national strategy to
address growing concern.
 40% of patients develop Parkinson’s before the
age of 60. Many are diagnosed in their 20s, 30s,
and 40s.
 Brain disease and disorders like Parkinson’s
cost the Canadian health care system more than
$30 billion annually.
 The area of the brain affected
in Parkinson’s is the substantia
nigra where a chemical mes-
senger called dopamine is
produced. The presence
of dopamine allows nerve
impulses to travel smoothly
from one nerve cell to
another. These nerve cells
are the ones which transmit
messages to the muscles of
the body to begin voluntary
movement. When dopamine
levels fall below 50%, the symp-
toms of Parkinson’s appear.
INSPIRATION
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ALTERNATIVE TREATMENTS
FOR EPILEPSY: A LIFE RESTORED
D.F. MCCOURT
editorial@mediaplanet.com
W
hitney Goulstone was
diagnosed with epi-
lepsy at 19 years old,
though she had al-
ready been suffering mild seizures
for years. Over the next decade, her
condition would prove non-respon-
sive to medication and her seizures
would grow steadily worse to the
point where,while she was pregnant
with her second child, she was hav-
ingfivetosevenviolentseizureseach
day.Her life had been entirely taken
overbythedisease.Whitneyhadlong
been told that she was unlikely to be
agoodcandidateforepilepsysurgery,
but she had to be sure.That’s when
she went into the Krembil Neurosci-
ence Centre at Toronto Western Hos-
pital for an evaluation at their Epi-
lepsyMonitoring Unit.
“My quality of life
was just zero”
“Epilepsy defined me,” Whitney says.
“I couldn’t go anywhere on my own.
I wore a helmet for years. I was in a
wheelchair. I couldn’t even lift my
child. I was at the hospital so often
thatthedoctorsaidmyfileneverwent
back in the drawer.My quality of life
wasjustzero.” Thepossibilityofasur-
gical treatment was a ray of hope for
her, a chance to bring some sense of
normalcybackintoherlife.
The Epilepsy Monitoring Unit was
able to localize Whitney’s neuro-
logical condition to a specific re-
gion of her brain.It turned out to be
a rare variety of the disease and the
location in the brain presented some
surgical challenges,but the surgical
team told Whitney that an oper-
ation was possible.This team includ-
ed Dr.Taufik Valiante,Co-Director of
the Epilepsy Program at the Krembil
Neuroscience Centre who says that,
though Whitney’s particular epi-
lepsy may have been of a rare type,
her storywas all too common.
One Ontarian in a hundred
is living with epilepsy
About one percent of all Ontarians
have epilepsy and about 30 percent
of those will find that, like Whit-
ney’s, their condition does not re-
spond to medication. That’s tens of
thousands of people in this prov-
ince alone suffering through person-
al versions of Whitney’s story. About
halfofthesepeoplewouldmakegood
candidates for surgical intervention,
but only two percent of those actual-
lyreceive the surgery.
“There’s a feeling overall that sur-
gery is always the last resort,” says
Dr. Valiante. “On average it takes a
patient 20 years from their first seiz-
ure until they are finally referred for
surgery, when we know that it only
takes about two years to determine
if someone is not going to respond
to medication.” Only by educating
people with epilepsy about the high
successratesandlowrisksofmodern
surgical treatments can they be fully
empowered to choose the treatment
plan that is best for them. “Even if
someone ultimately decides they
don’twantsurgery,”saysDr.Valiante,
“it’s been shown that their quality of
life living with epilepsy can be im-
proved simply by having this infor-
mation and knowledge.”
A new strategy of
epilepsy care
Forthosewhodochooseasurgicaltreat-
ment plan,the newProvincial Strategy
for Epilepsy Care seeks to dramatically
increase access to epilepsy care cen-
tres around the province by increasing
their capacity. The Krembil Neurosci-
enceCentrespecificallyhasrecentlyre-
ceivedfundingtodoublethenumberof
beds in the Epilepsy Monitoring Unit,
dramatically reducing wait times for
evaluationandsurgery.
This improved access to epilepsy
surgery holds the promise of an en-
tirely new life for thousands of On-
tarians like Whitney Goulstone. It’s
been four years since Whitney’s sur-
gery;fouryearswithoutasingleseiz-
ure. I can hear her tearing up. “This
surgery gave me my life back,” she
says.“I can hold mychildren again.”
■■ A human brain weighs about 1.4
kilograms (three pounds) and is
mostlymadeofwater.
■■ The brain and the rest of the
nervous system run on electricity,
but at low levels. Brain signals in-
volve less than one-tenth the volt-
ageofanordinaryflashlightbattery.
Senses
■■ Whenyousmellsomething,your
nose is sensing chemicals in the air.
It sends messages to a brain area
called the olfactory cortex, which
can distinguish between about
20,000scents.
Memories
■■ The amygdala makes sure highly
emotional moments are “burned in-
to”yourmemory.
■■ The hippocampus — a part of the
brain that is used to form long-term
memoriesandmentalmaps—canac-
tuallygrowwithconstantuse.
Changes
■■ Before a child is born,his or her
brain cells multiply rapidly. On
average, half a million neurons
form every minute during the first
fivemonthsinthewomb.
■■ After a peak in brain functioning
in your 20s, the number of neur-
al connections gradually declines,
and over time, your memory may
becomeabitlessreliable.
21st-century
■■ Doctors can now activate (or de-
activate) certain brain regions by
surgically inserting a wire into
the brain and sending in pulses of
electricity with what’s called deep
brain stimulation (DBS).More than
80,000 people have already used
DBS to treat Parkinson’s disease,
andithasalsobeenusedtotreatob-
sessive-compulsivedisorder.
ONTARIO SCIENCE CENTRE
Compiled with information
from Ontario Brain Institute
editorial@mediaplanet.com
The inside story on
your brain
DON’T MISS
INSIDE THE OPERATING ROOM
Dr. Taufik Valiante, Neurosurgeon and
Co-Director of KNC’s Epilepsy Program,
performs a type of specialized brain
surgery that offers relief for people with
drug-resistant epilepsy.
PHOTO: UNIVERSITY HEALTH NETWORK
Over 100,000 Ontarians are currently living with epilepsy.
Dailyseizureskeepmanyfromlivingthelifetheywanttolive,andtoofew
areawareofthepotentialreliefsurgerycanprovide.
INSPIRATION
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Eat a well-balanced diet
Abalanceddietincludesagoodsup-
ply of omega-3 fatty acids from fish
(and low amounts of saturated fats)
as well as fruits and vegetables rich
in antioxidants,vitamins,and min-
erals. The sum of your diet, rather
than individual foods or nutrients,
is more important for maintaining
brainhealth.
Manage your stress
Too much stress makes your brain
work less efficiently.Two brain re-
gions are particularly sensitive to
stress: the hippocampus, which is
responsible for learning and mem-
ory, and the prefrontal cortex,
which is responsible for our ability
tomulti-task.
Get enough sleep
Sleep is necessary for the brain to
function, and helps you learn new
information. In the short-term,
sleep deprivation causes memory
problems, impaired immune sys-
tem function,attention deficit,and
even hallucinations. Chronic sleep
deprivation is associated with an
increased risk of heart disease,type
2diabetes,andobesity.
Take your brain for a walk
In addition to being good for your
heart, waistline, and muscles, ex-
ercise is good for your brain. Did
you know that people who exer-
cise regularly are 30-40 percent less
likelyto develop dementia (likeAlz-
heimer’s disease) and 25 percent
lesslikelyofhavingastroke?
Train your brain
Strengthen your brain by doing
regular mental exercises. Benefits
of brain training are seen in people
ofallages.
For maintaining your
brain health
TIPS
BIOGEN IDEC and the BIOGEN IDEC logo are trademarks of Biogen Idec. © 2014 Biogen Idec.
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Visit biogenidec.ca or call 1-866-359-2502.
Caring deeply,
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Whenfacingadiseaselikemultiple
sclerosis,youareyourownbestadvocate
Mother of two
takes charge
of her disease,
doesherresearch,
andplaysan
activeroleinher
treatment.
KIMBERLEY FEHR
editorial@mediaplanet.com
T
he pins and needles start-
ed in her right hand. Car-
rie MacLean was a 28-year-
old newlywed, working in
a high-stress job as an IT team lead.
Within four days she lost function-
ality in her hand. She couldn’t even
pick up a pen.But then she gradually
returned to normal, like the night-
mare never happened.
Nearly two years later,she had an-
other attack,and received a diagno-
sis: multiple sclerosis (MS).
“I was petrified,” she recalls. “I
thought I had a couple of years to
live – it was a death sentence.That’s
what I thought.”
Understanding MS
She threw herself into learning
everything she could about MS.The
more she read, the more she real-
ized: “This is not a death sentence.
This disease is manageable.You can
live a long life.”
MacLean has the most common
variation of the disease — relaps-
ing-remitting MS — which is char-
acterized by attacks,followed by re-
mission. The danger is the disease
might deteriorate to secondary-pro-
gressive MS and increasing disabil-
ity, which happens to about half of
people within 10 to 20 years,accord-
ing to the MS Society of Canada.
Early detection
AccordingtotheblogbyDr.KarenLee,
An Inside Look at MS Research, there
is, however, a silver lining for people
with progressive MS aswell as relaps-
ing-remitting MS — early treatment.
Research suggests that there is grow-
ing evidence showing that treating
MS as early as possible can have a sig-
nificant impact in long-term treat-
ment response,qualityof life,and dis-
easeprogressioninpeoplewithMS.
Ten years have passed for Mac-
Lean and you can’t tell she has MS.
People don’t see the pins and nee-
dles. She doesn’t limp. “I don’t look
like I have MS. My life is relatively
normal,” says MacLean.
She lives in Waterdown,Ont.with
her husband and two daughters,who
she had after her first MS attack.She
does yoga and attends an MS support
group.But life has changed.
When she realized stress and lack
of sleep were her triggers for at-
tacks, she left her job to raise her
two girls.
Finding the right drug
The first MS drug she tried made
her anemic. The second required
daily injections. Terrified of nee-
dles, her severe panic attacks
meant it wasn’t an option.
When a new oral treatment op-
tion was coming to the Canadian
market, she knew that was the
drug she wanted. She says stud-
ies showed it reduced relapses and
the severity of attacks by approxi-
mately 50 percent.
“The research is changing so fast.
You need to be your own best advo-
cate,” MacLean said.
She brought her research to her
neurologist and he teased her. “He
said, ‘How do you know so much?’ I
said,‘BecauseI’vedonemyresearch.’”
Carrie experienced mild side ef-
fects like flushing and nausea,
which vanished after two months,
and she has been happily on the
drug ever since.
Her advice for new MS patients is
that they do their own research on
legitimate websites.
“In doing that, you become less
scared,” she says.
CARRIE MACLEAN AND HER FAMILY
It is important to seek early treatment
for MS and determine for yourself which
treatment is best for you.
PHOTO: CARRIE MACLEAN
FOR MORE TIPS ON MAINTAINING BRAIN HEALTH, VISIT BRAINHEALTHINFO.CA
ONTARIO SCIENCE CENTRE
Compiled with information
from Ontario Brain Institute
editorial@mediaplanet.com
“This is not a death sentence.
This disease is manageable. You
can live a long life.”
INSIGHT
AN INDEPENDENT SUPPLEMENT BY MEDIAPLANET TO THE NATIONAL POST6 · BRAINHEALTHINFO.CA
KalGene Pharmaceuticals committed to develop
a disease modifying therapy for Alzheimer’s
The National Research Council of Canada (NRC) and KalGene Pharmaceuticals are co-developing a
novel therapeutic molecule against Alzheimer's disease. KalGene is collaborating with the Centre
for Imaging Technology Commercialization (CIMTEC) and the Montreal Neurological Institute to
access the most advanced diagnostic techniques.
“Validating this new Canadian-developed Alzheimer’s therapy with the best imaging technology
available will be an exciting development for clinicians who must manage this disease today
without effective treatments,” says neurologist at McGill University Dr. Rosa-Neto MD, Ph.D.
“We are committed to co-developing new treatments with NRC against diseases that have
traditionally been difficult to treat,” says Dr. Yoganathan, KalGene, CEO. "This multi-disciplinary
collaboration brings new treatments one step closer to people living with Alzheimer’s."
For additional information on KalGene’s efforts to develop new treatments for
Alzheimer’s disease, please contact nathan@kalgene.comwww.kalgene.com
PRINCIPAL
INVESTIGATORS
Dr. Gary Armstrong
Dr. Philip Barber
Dr. Robert Bartha
Dr. Sandra Black*
Dr. Michael Borrie
Dr. Jonathan Brotchie
Dr. Mallar Chakravarty*
Dr. Howard Chertkow
Dr. Louis Collins
Dr. Pieter Cullis
Dr. Alain Dagher
Dr. Karen Davis
Dr. Alan C. Evans
Dr. Elizabeth Finger*
Dr. Corinne Fischer
Dr. Morris Freedman
Dr. Mervin Gornitsky
Dr. Robin Green
Dr. Barry Greenberg
Dr. Ariel Graff Guerrero
Dr. Lili-Naz Hazrati*
Dr. Nathan Herrmann
Dr. Sylvain Houle*
Dr. Mary Jenkins
Dr. Mandar Jog
Dr. Tom Johnston
Dr. Julia Keith
Dr. Alex Kiss
Dr. Erin Knock
Dr. Michael Kovacs
Dr. Sanjeev Kumar
Dr. Krista Lanctot
Dr. Blair R. Leavitt
Dr. Penny MacDonald
Dr. Don Mahuran
Dr. Mario Masellis*
Dr. Mary Pat McAndrews
Dr. David Mikulis
Dr. Philippe Monnier
Dr. Kieran Murphy
Dr. Joanne Nash
Dr. Gagan Panigrahi
Dr. Stephen Pasternak
Dr. Hemant Paudel
Dr. William Pavlosky
Dr. Christopher Pearson
Dr. Bruce Pollock
Dr. Jens C. Pruessner
Dr. Ekaterina Rogaeva*
Dr. Tony Rupar
Dr. Pablo Rusjan
Dr. Tajas Sankar
Dr. Hyman Schipper
Dr.MichaelSchlossmacher*
Dr. Monika Schmidt
Dr. Eric Smith
Dr. Antonio Strafella*
Dr. Keith St. Lawrence
Dr. Stephen Strother
Dr. Peter Stys
Dr. David Tang-Wai*
Dr. Carmela Tartaglia*
Dr. Charles Tator
Dr. Neha Thakkar
Dr. R. Terry Thompson
Dr. Rommel Tirona
Dr. Julianna Tomlinson*
Dr. Shigeki Tsutsui
Dr. Aristotle Voineskos
Dr. Yu Tian Wang
Dr. Donald Weaver
Dr. Jennie Wells
Dr. Alan Wilson*
Dr. Zhengrui Xi
Dr. Lisa Yu
Dr. Beibei Zhao
Dr. Lorne Zinman
Dr. Guangyong Zou
WE CONGRATULATE OUR YEAR-TO-DATE AWARDEES
A gifted group representing some of most accomplished experts in the world.
The Weston Brain Institute is honoured to support Canadian neuroscientists.
*holds multiple grants
00IN
SUR
Epilepsy affects
1in100 Canadians.
…It most often strikes in adolescence, resulting in a life-long
battle against seizures and in some cases death.
Help find a solution. Donate to epilepsy research at www.epilepsy.ca.
Call 1-877-734-0873 or mail donations to: Epilepsy Canada, 2900 John Street, Suite 2B, Markham, ON L3R 5G3Call 1-877-734-0873 or mail donations to: Epilepsy Canada, 2900 John Street, Suite 2B, Markham, ON L3R 5G3
JOE ROSENGARTEN
editorial@mediaplanet.com
A
n innovative approach for
funding research is aimed at
accelerating the development
of safe and effective breakthrough
treatments for neurodegenerative
diseases and could be a game changer
foragingCanadians.
Recent advances in healthcare are
helping Canadians to live longer than
ever before. But, during this period
of great medical progress, there has
been a distinct lack of treatments for
neurodegenerativediseasesofaging.
New approach to funding
essential research
There are currently no cures for dis-
eases such as Alzheimer’s, Parkin-
son’s and amyotrophic lateral sclero-
sis(ALS),andtreatmentstoslowdown
theseconditionsarenotaseffectiveas
theyneedtobe. In2013,approximate-
ly2.9 million Canadianswere directly
impacted by these conditions, either
as patients or caregivers.In a genera-
tion,thisnumberisestimatedtogrow
to 16.4 million Canadians, while the
economic impact of these diseases to
Canada is estimated to grow from $28
billionto$215billionperyear.
By supporting high-risk, high re-
wardresearch projects,aleadingCan-
adian funding agency is addressing
this critical issue in a new and com-
pellingway.
“Our support,anchored byaworld-
class scientific advisory board, our
approach, built around rigorous
business principles, and an innova-
tive operating model, will allow for
the kind of complex research that
needs to be done now,and to be done
more quickly,” explains W. Galen
Weston, Chairman and President of
The W. Garfield Weston Foundation,
which launched the Weston Brain
Institute, a granting agency direct-
ly supporting Canada’s neurosci-
ence research community. “ We are
determined to be the catalyst in a
transformational new chapter in the
fight against brain diseases.”
Bridging the valley of death
Three main phases of research are
needed to develop a new treatment:
basicresearch,translationalresearch
and clinical trials. Basic research is
relatively well-funded and, at the
other end of the spectrum,large bio-
tech and pharmaceutical compan-
ies resource late stage clinical trials.
Translational research though, is
underdeveloped; a situation that it is
often referred to as the translational
gap or “valleyof death”.
“In our view,driving forward key
breakthroughs in translational re-
search is critical to finding solu-
tions to this problem. Current-
ly, the lack of resources and skills
means some of the most promis-
ing ideas are stalled or stopped in
the “valley of death,” explains Alex-
andra Stewart, Executive Direc-
tor at the Weston Brain Institute.
“We are focused on bridging that
gap to make sure that what could
be breakthrough treatments have
a chance of making it to patients.”
Dr. Ekaterina Rogaeva has been
conductinggeneticresearchonavar-
iety of neurodegenerative diseases at
the University of Toronto since 1992
and has contributed substantially
to the development of effective gen-
etic testing of different forms of de-
mentia. Without the willingness to
support high risk,high reward work,
Dr.Rogaeva would have struggled to
make such an impact.
Accelerating research on
neurodegenerative diseases in Canada
COLLABORATING FOR A CURE
Chair of the Advisory Committee of
the Weston Brain Institute, Dr. Andres
Lozano (left) and W. Galen Weston
(right), President and Chairman of The
W. Garfield Weston Foundation, which
launched the Weston Brain Institute, at a
special event in Toronto.
PHOTO: TOM SANDLER
“Iwasworking on a particular gene
that had just been discovered so there
wasnopreliminarydata,”Dr.Rogaeva,
the Weston Brain Institute award-
ee explains. “We wanted to develop a
noveltechniquetouseinformationas
a potential biomarker.The Institute’s
fresh approach to funding proposals
meant they considered the potential
of the research and I was granted re-
sources quickly, which is unique. It
wasrisky,butithasworked.”
Collaborating towards success
Thereisanarrayofmeaningfulcollab-
orations between funding institutes
and neuroscience research commun-
ity in Canada.The Institute’s unique,
cross-disease focus is helping to bring
together researchers from different
silos to help spark breakthroughs,and
the fast,flexible and interactive grant-
ing process is allowing funding deci-
sionstobemadequicklyandeasily.
“Science is a field where collabor-
ation is extremely important, it re-
quires teams with specific expertise,”
explains Dr.Andres Lozano, Chair of
theWeston Brain Institute’sAdvisory
Board.“Wehaveworld-classscientists
in Canada and by funding them to
work on neurodegenerative diseases
ofaging,wewillacceleratethepathto
thediscoveryofnewtreatments.”
“We have world-class scientists
in Canada and by funding them
to work on neurodegenerative
diseases of aging, we will
accelerate the path to the
discovery of new treatments.”
INSIGHT
AN INDEPENDENT SUPPLEMENT BY MEDIAPLANET TO THE NATIONAL POST BRAINHEALTHINFO.CA · 7
Late last year, British Prime
Minister David Cameron led
the world’s first G8 Demen-
tia Summit in London. Speak-
ing to an audience of global
dementia specialists, he de-
clared: “The truth is that de-
mentia now stands alongside
cancer as one of the greatest
enemies of humanity.”
He was not exaggerating. Accord-
ing to a Statistics Canada report,Alz-
heimer’s disease, the most common
formofdementia,istheseventh-lead-
ingcauseofdeathinCanada.
Alzheimer’s disease is a fatal, pro-
gressive brain disease that destroys
brain cells and causes severe mem-
ory impairments. For individuals
who suffer from the disease,everyday
taskssuchaspreparingamealbecome
challenging. As a result,it not only af-
fects individuals with the disease, but
familymembersandsocietyasawhole.
The need for investment
Given the devastating nature of the
disease and the impact it has on so-
ciety, Alzheimer’s disease research is
achinglyslowandgrosslyunderfund-
edcomparedtootherdiseases.
“When you look at other diseases,
such as cancer and HIV/AIDS,there are
majorinvestmentsinresearchandsci-
entistsarecontinuallydiscoveringnew
treatments,” says Mimi Lowi-Young,
CEO of the Alzheimer Society of Can-
ada.“We need the same thing to hap-
penwithAlzheimer’sdisease.”
Currently 747,000 Canadians are liv-
ingwith Alzheimer’sdiseaseandother
forms of dementia. By 2031,the num-
berisexpectedtoreach1.4million.
“It’s urgent that we recognize that
we need to invest a major amount of
moneyinto dementia research,” Lowi-
Youngsays.“Raisingawarenessandin-
vestmentsarevital.”
Lack of funding
As baby boomers age, the number of
people with Alzheimer’s will inevit-
Finding a cure for Alzheimer’s disease
ably increase,so addressing the need
for research and innovations in the
discovery and development of Alz-
heimer’s disease therapeutics is be-
comingincreasinglycrucial.
However a lack of sustained funding
is preventing researchers and drug de-
velopers from doing thework thatwill
eventuallyconquerthedisease.
“Right now, we are spending
around 30 billion dollars annual-
“A lot of people are working hard
to come up with better medica-
tions,” says Michael Poulter, Pro-
fessor and Director of the graduate
neuroscience program at the West-
ern University's, Robarts Research
Institute. He notes that small bio-
pharmaceutical startups are now
devoting resources to the develop-
ment of anti-seizure medications.
Himalayan flower extract a
possible treatment
Poulter has launched his own start-
up, OB Pharmaceuticals, hoping to
bring to human trials the most prom-
isinganticonvulsanthehaseverstud-
ied. It was found in the root extract
from a small flower that grows high
in the Himalayas.A tea brewed from
the plant’s crushed roots has report-
edly been used to control seizures for
centuries in that region. Pakistani
scientists (lead by Professor M. Iqbal
Choudhary) who isolated the active
component and developed the manu-
facture of it introduced the molecule
toPoulterin2009.
Of course, this molecule isn’t
the only one attracting attention.
“Just the other day I talked to some-
one who is interested in using
extract(s) from the marijuana plant
to control seizures,” Poulter ex-
plains.“The hope is that an extract
could one day be used as an add-on,
a supplement to established medi-
cation that many not be working as
well as hoped.”
While a new anti-seizure medica-
tion might be discovered through a
concerted effort,it might also be dis-
covered by accident. “Sometimes a
use for a drug is just stumbled up-
on,” Poulter explains. “For example,
in the 1950s a drug that was thought
to be an antihistamine turned out to
J
aime Weatherbee, Man-
ager of Donors and Admin-
istration of Epilepsy Can-
ada, still remembers the
email. It was one of doz-
ens in her inbox that September
morning but it was nothing like
the others. “I don’t know why I am
writing this,” a man wrote, “I just
feel I should tell somebody what
is about to happen.” He went on to
paint a bleak picture of his life.De-
bilitating seizures prevented him
from working and he was unable to
support his child.He spent most of
his time alone. “Soon,” he wrote, “I
will take my own life.”
Weatherbee immediately called
a suicide prevention hotline in
the man’s area. She was told they
couldn’t help unless he contacted
them directly. She sent an email to
the man, urging him to make the
call.No response. She contacted the
RCMP, who managed to reach him.
Two months later, she describes
the incident as “paralyzing.I mean,
what could I do? I just felt helpless.”
Great strides in treatment
About 30 percent of people with epi-
lepsysufferregularseizures—dozens
a day,in some severe cases — and the
impact on their lives ranges from dis-
ruptive to debilitating. The unfortu-
nate few who also suffer from un-
related mental health problems are
sometimes overwhelmed by despair.
Every two months, Epilepsy Canada
receives a message from someone
contemplating suicide. But there is
hope. We’ve seen great strides in the
treatment of this neurological disor-
der in recentyears. Today,most of the
300,000Canadianswhohaveepilepsy
livefulllives—andthesenumbersare
expectedtogrow.
With the number of Canadians suffering fromAlzheimer's disease and other forms of
dementia expected to double by 2025,investing in research for a cure is crucial.
BRIDGING THE LINK BETWEEN
MENTAL HEALTH AND EPILEPSY
BREAKTHROUGHS IN EPILEPSY TREATMENT
Biopharmaceutical companies are researching the positive effects of various plant
extracts towards finding new anti-seizure medications.
be an antipsychotic that was effect-
ive in treating schizophrenia.”And of
course, Viagra was intended to treat
high blood pressure. It was just a
happy coincidence that it could treat
erectiledysfunctionorimpotence.
Breakthrough ‘just around
the corner’
Six years ago, the United States Food
and Drug Administration (FDA) ap-
proved an anticonvulsant that pre-
ventsseizuresbydecreasingabnormal
excitement in the brain. Poulter says
the introduction of this drug, Levet-
iracetam (sold as Keppra),was the last
big breakthrough in the treatment of
epilepsy. Given the current efforts of
researchers and the advocates who
support them,he believes another big
breakthroughisjustaroundthecorner.
That is music to the ears of Gary
Collins, Executive Director of Epi-
lepsy Canada. “As someone living
with epilepsy, I always feel badly
for those whose lives have been
deeply affected by our disorder,” he
says.“I’m most fortunate that mine
is managed effectively through
medication and I can live a near
normal life.”
Jacques Brunelle,President of the
Board of Epilepsy Canada, acknow-
ledges the importance of improved
treatment for seizures. That, he
says,combined with efforts to elim-
inate the stigma associated with
epilepsy, should go a long way to
improving the lives of people living
with it. “With the help of so many
people in so many ways,” he says,
“I’m sure we’ll find a cure.”
“With the help
of so many
people in so
many ways,
I’m sure we’ll
find a cure.”
RANDI DRUZIN
editorial@mediaplanet.com
ly to maintain Alzheimer’s patients
through care-giving. We need to do
more to accelerate the discovery and
development of new drugs to treat
and prevent Alzheimer’s disease,”
says Dr. T. Nathan Yoganathan, CEO
of KalGene Pharmaceuticals Inc., a
privately-held Canadian pharma-
ceutical company developing an Alz-
heimer’s drug. “With better treat-
ments for Alzheimer’s disease, the
opportunity for health care system
savings over time is immense.”
Addressing the
misconceptions
Part of the reason research intoAlz-
heimer’s disease has attracted few-
er public and private dollars in the
past is that Alzheimer’s disease is
still attached to a number of wide-
spread misconceptions, such as
the belief that dementia is simply a
natural part of aging.
These kinds of misconceptions can
standinthewayofourabilitytounder-
stand and help peoplewho suffer from
Alzheimer’sdisease.
“RaisingpublicawarenessaboutAlz-
heimer’s disease is critical. There’s a
huge amount of stigma about the dis-
ease,and it’s really important that we
address that stigma through educa-
tion,”saysLowi-Young.
Moving forward
Despite chronic under-investment
in Alzheimer’s disease research, col-
laborative partnerships between re-
searchers and clinicians around the
world have led to many groundbreak-
ingdiscoveriesinthestudyofdemen-
tia.Manyofthesediscoveriesarehap-
peninghereinCanada.
“Canadian companies are making
enormous strides in developing treat-
ments for Alzheimer’s disease. But
public-private partnerships are need-
ed to accelerate funding into the de-
velopment of drugs and therapeut-
ics,” says Dr.Yoganathan.“The fact is,
the more that we get public attention
about what we need to do, the faster
wecanfindacure.”
BENJAMIN CHACON
editorial@mediaplanet.com
“There is an
urgent need
to recognize
that we need
to invest a
major amount
of money into
dementia
research.”
Today, 747,000 Canadians have Alzheimer’s
disease or other dementia. This number will
nearly double to 1.4 million in less than 20 years.
After age 65, the risk of dementia doubles
every five years.
While age is a major risk factor, dementia also
occurs in people in their 40s and 50s.
As of 2008:
 71,000 Canadians aged 65 and younger had
dementia.
 50,000 Canadians aged 50 and younger had
dementia.
Dementia can lie dormant in the brain up to 25
years before the first symptoms appear.
ALZHEIMER’S
IN CANADA
PHOTO AND CONTENT SOURCE: ALZHEIMER SOCIETY OF CANADA
Starting in January, thousands
of Canadians participate in the
annual Walk for Memories in
communities across Canada to
raise funds for local Alzheimer
Society programs and services.
January is also Alzheimer
Awareness Month.
INSPIRATION
AN INDEPENDENT SUPPLEMENT BY MEDIAPLANET TO THE NATIONAL POST8 · BRAINHEALTHINFO.CA
I
n2004,Christianereceivednewsthat
would change her life forever. She
was diagnosed with multiple scler-
osis (MS), an incurable, often disab-
ling,disease that affects an estimated
100,000Canadians.
Signs and symptoms
The symptoms of MS vary greatly
from person to person and they can
appear suddenly out of the blue —
fatigue, difficulty in walking, trem-
ors, dizziness, and cognitive impair-
ment to name a few. For Christiane,
the first sign came eight years earlier
when she woke up one morning and
was unable to see out of her left eye.
Her doctor said it could be a sign of
MS.“I didn’t like that word at all,” she
recalls.“Myfirstreactionwasdenial.I
refused to even think about it.”
Then a few years later, at the be-
ginning of a ski trip, her left leg
went numb. It was weak and lacked
strength.Determined to not let it ruin
her vacation, Christiane went skiing
anyway,using her hands to move her
limbwhereitneededtobe.
After this second incident, Chris-
tianewasreferredtoaneurologistwho
was able to confirm a diagnosis of re-
lapsing-remitting MS (the most com-
mon of the four types), following a
Magnetic Resonance Imaging (MRI)
test. Immediately, she assumed the
worst:“IthoughtI’dbelivingmylifein
awheelchair.Iwasinshock.”
A manageable condition
ButthemoreshelearnedaboutMS,the
moresherealizedthatitwasamanage-
able condition through disease-modi-
fying drugs and a healthylifestyle. She
didn’t have to give up her active life-
style. She could still do the things she
loved — downhill skiing, cycling, ten-
nis, swimming,travelling to countries
like Austria (her favourite) with her
husband, and running her own mar-
ketingandgraphicdesignagency.
She was referred to an MS clinic for
treatmentwhereshewasprescribedan
injectabledrugtoslowtheprogression
of the disease.In March 2014,after an
annual appointment with her doctor,
she switched to a once-a-day oral op-
tion — one she had heard about two or
threeyearspriorthatwasbeingstudied
substantiallybyCanadianneurologists.
“Iwasthrilledwhenitbecameavail-
able. I would no longer have to have
dailyinjections,” she says.“I didn’t like
them. Foradecade,theywereconstant
remindersthatIhadaseriousdisease.”
There were practical considerations as
well. Oral treatment meant an end to
the pain and bruising she experienced
attheinjectionsites.
New and convenient options
And,for someone like Christianewho
loves to explore theworld,the change
was freeing. She no longer has to
worry about the hassle that comes
with traveling with hypodermic nee-
dles,orwith cleaning up broken glass
in a hotel due to a droppedvial.
“The oral medication has made a
big difference in my life,” she says.
“It’s so convenient. I take my pills
each morning and, in seconds, I’m
ready to begin my day. I no longer
have side effects,like constipation,to
contendwith. Ifeelgreat.”
Canada has the highest rate of MS
disease in the world, but thankfully
has some of the top MS researchers.
Some of Christiane’s time is devoted
to planning community fundraising
events to help find a cure for MS.The
irony is that,long before her diagno-
When Lara was first crowned
Canadian boxing champion
in 2002, she had no way
of knowing that her life’s
toughest battle would take
place out of the ring and
that her opponent would be
multiple sclerosis.
Growing up, Lara had always been
an athlete, always searching for the
next competitive sport to conquer.
First,she wanted to be a bodybuilder,
then it was kickboxing.But it didn’t
take long for Lara to discover her true
sporting passion: boxing. “I boxed
from when I was 18 to 24 and I loved
it,”saysLara,now35.“Itrainedallthe
time,was always in the gym,and ran
six times aweek.”
An unexpected diagnosis
Although only diagnosed with MS in
June 2009,Lara first experienced ser-
ious symptoms back in 2002,the year
that she had her first MRI scan — the
results of which were abnormal. But
her MSwasn’t picked up,and over the
intervening eight years Lara experi-
encedsporadicyetintensesymptoms.
In2003,Larawasn’tabletotrainfor
the most of the year because of her
symptoms.She went to the Canadian
Boxing Championships anyway,feel-
ing sick, and won, also receiving the
award of Best Female Boxer of the
Tournament.Lara had,effectively,be-
cometheCanadianboxingchampion
while sufferingwith MS.
“In those years, I would go
through periods of a couple of
months when I experienced numb-
ness of my whole body,” says Lara.
“I went down the road of it being
an iron deficiency, and was getting
iron injections at one point, but
nothing was working.”
Lara went back to the neurologist
where she had her first MRI and ex-
plained what was happening, ex-
pecting to hear that nothing was
seriously wrong. It was then that
she heard the life changing words,‘I
thinkyou have multiple sclerosis.’ “I
tried to continue myjob in corporate
communications but I was sleeping
under my desk, crying all time and
sometimes I couldn’t move for a few
days,” Lara says.“I had to leavework,
I just couldn’t focus.”
Finding the right treatment
After diagnosis, Lara’s symptoms
worsened and her doctors prescribed
a series of powerful medications.She
tookherfirstMSmedicationforabout
a year,but it had a lot of nasty,flu-like
side effects and also caused Lara se-
vere depression. She was prescribed
something different but again, the
newtreatmentwasnotsuccessful.
“I got very bad anxiety and had a
really bad relapse, which included
the numbness again,” says Lara.” I
was not able to type or hold things
in my hands and I was having
trouble thinking and remembering
things.” A new MRI scan confirmed
what Lara was feeling, the medica-
tions weren’t working.
The right to choose
It was then that Lara’s doctor gave
her some treatment options and the
freedom to choose her own medica-
tion. She decided to go on a clinical
trial for a new drug (which has been
studied in multiple sclerosis since
1999)with a unique approach to dos-
ing.It was a tough decision but one
that Lara thought she should take.
Lara researched her treatment op-
tions and decided that the benefits
of the new medication outweighed
the risks or side effects,and that this
treatment had the strongest poten-
tial to alter her MS prognosis.
In the first year of the trial for the
new drug, Lara had one daily in-
fusion over a period of five consecu-
tive days and,in the second year,one
dailyinfusion over three consecutive
days.Since having the second year’s
dose,Larahasnotneededanyfurther
treatment to stop the progression of
MS, although she does still need to
treat some of the symptoms.
Lara’s condition is currentlymuch
better than she ever thought it could
be. Her life has changed dramatic-
ally since being diagnosed with MS.
“I can run again now, which is fan-
tastic; however, if I ran every day I
would trigger huge amounts of ten-
sion as well as fatigue and would do
nothing else,” says Lara.
One thing’s for sure,though: Lara
will continue to find the courage to
fight her condition.“The way I fight
is by taking opportunities when I
get them,” she says,“like going into
a clinical trial for a drug that sounds
the most promising of my big-gun
options, and by constantly adapt-
ing, trying different angles and ac-
cepting things I’d rather not.”
Former Canadian boxing champion talks
about her battle with multiple sclerosis
JOE ROSENGARTEN
editorial@mediaplanet.com
Living with multiple sclerosis without fear
MICHELE SPONAGLE
editorial@mediaplanet.com
■■ Canada has the highest
rate of multiple sclerosis (MS)
in the world.
■■ Affects an estimated
100,000 Canadians.
■■ Every day, 3 people are
newly diagnosed.
■■ Usually diagnosed between
the ages of 15 to 40.
■■ Most common neurological
disease affecting young
adults in Canada.
■■ Estimated cost to the
Canadian economy is more
than $1 billion per year.
MS IN CANADA
Every year more than 40,000
Canadians in more than 160
communities support the MS Walk
and raise vital funds for people living
with MS.
PHOTO: MS SOCIETY ONTARIO
DID YOU KNOW?
sis, Christiane donated to the Mul-
tiple Sclerosis Societyof Canada.
“It was a disease that scared me,”
she explains. “Now that I’ve been
diagnosed, I want to do more than
just send a cheque.I’ve benefitted so
much from what life has given me.I
want to give back.”
It helps Christiane face every day
with optimism and a one-day-at-
a-time attitude. “I’m living my life
without fear. I’m doing what I want
to do.And I’m happy.”
“The way I fight is by
taking opportunities
when I get them.
Like going into a
clinical trial for a
drug that sounds
the most promising
of my “big-gun”
options, and by
constantly adapting,
trying different
angles and accepting
things I’d rather not.”
THE MS WALK
A celebration of the power we have
to change the lives of Canadians with
MS. Find out what you can do in your
community to make a difference!
PHOTO: MS SOCIETY ONTARIO

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Understanding the Brain: An Independent Supplement Explores Neurological Conditions

  • 1. AN INDEPENDENT SUPPLEMENT BY MEDIAPLANET TO THE NATIONAL POST BRAINThe Inside Story AN EXHIBITION LOCAL SUPPORTING SPONSOR MEDIA PARTNER KNOWLEDGE PARTNER Brain:The Inside Story is organized by the American Museum of Natural History, New York (www.amnh.org),in collaboration with Codice,Idee per la cultura,Torino,Italy in association with Comune di Milano – Assessorato Cultura,Italy;Guangdong Science Center,Guangzhou,China;and Parque de las Ciencias,Granada,Spain. OUR PREMIER PARTNERS NEUROLOGICAL CONDITIONS brainhealthinfo.ca UNDERSTANDING THE SCIENCE BEHIND THE BRAIN Featuring NEURODEGENERATIVE DISEASES Finding a cure for Alzheimer’s and Parkinson’s EPILEPSY Breakthroughs and alternative treatment options MULTIPLE SCLEROSIS Patients share their journeys Mediaplanet had the chance to talk to Jason Silva, the host of National Geograph- ic’s hit series, Brain Games. Here’s what he had to say about human creativity, futurism and how we can extend the boundaries of our minds. Mediaplanet In 2011, you became host of National Geographic’s award-win- ning show Brain Games. What is the premise of the show? Jason Silva Brain Games is kind of a pop-science reality series that uses interactive experiences — cogni- tive optical illusions and participa- tory games — to teach people about their brains. The games function as devices that highlight the shortcom- ingsinhowweperceivereality.Every time you play along as you watch, you’re experiencing these holes, these lapses inyour perception. Most people take their percep- tions of reality for granted. People think they have some kind of tan- gible experience of the world. But the reality is that they don’t. So es- sentially the show uses these games to teach that to people. MP How do the games high- light our shortcomings in perception? JS The games are meant to induce curiosity in people. And the first way to induce curiosity is to give people a sense of wonder. We make people question the things theytake for granted — particularly their per- ception of the world. Every episode looks at a different theme and how that theme plays out in the brain. We look at things like fear,creativity and imagination. I always tell people that the first step towards re-engagingyour brain is to step out of your traditional pat- tern of thought. And instead,expose yourself to new novel stimuli. Ex- perience something new. This is the way to engage the brain. MP You often talk about actualizing human potential. How can we access that potential? JS I think that for a lot of us,the on- ly thing standing in our way is our- selves. That’s why I’m really inter- ested in flow states — moments of pure virtuosity. Creative flow states are associ- ated with elite athletes when they exceed their potential, and with jazz musicians and freestyle rap- pers when they’re in the zone. When you get into these creative flow states the part of the brain that’s responsible for self-con- sciousness goes silent. This is just a reminder that a lot of the time,our limitations are self-im- posed. And so a way of challenging our limitations is to put ourselves in- to situations that induce these flow states and silence our inner critic. BENJAMIN CHACON editorial@mediaplanet.com MP How do you exercise your brain personally? JS I try to expose myself to novel experiences: meet new people, read new books, travel when I can, go to museums,expose myself to challen- ging and different things.I flood my body and mind with new experien- ces.Givemenewstufftoprocess.Give me a hit of bewilderment; of wonder- ment.That’swhat gets me excited. MP What got you interested in understanding the sci- ence behind the brain? JS Knowledge is addicting. Hu- mans get a hit of dopamine in the brain whenever we’re exposed to novel stimuli. It’s why human be- ings are such adventurous crea- tures. We have an insatiable urge to understand, to question, to de- construct what is fascinating. And I really feel that. I wake up in the morning and I want to find some- thing new or different that will get me excited. Jason Silva, host of National Geographic’sBrain Games,shareshis knowledgeofthehumanmindandencouragesCanadianstochallengetheirs. I suppose that’s where my in- terest comes from. As long as I’m growing, I’m not ending. As long as I’m expanding my horizons, I’m not diminishing them. MP What is the goal behind your MS Visionaries initiative? JS MS Visionaries, created by Bio- gen Idec with Yahoo Health,is a cam- paign that celebrates passionate in- novative visionary individuals who are working to make people living with MS lead better lives.They’re try- ing to help and alleviate some of the difficulties associated with MS out of the kindness of their hearts. Basically the campaign is meant to beacelebrationofthosewhoarelend- ingtheircreativityandeffortstohelp- ing others who are facing certain dif- ficulties living with MS.It’s a celebra- tion of the human spirit and human capacitytoovercomeboundaries. PHOTO:MILLERMOBLEY/NATIONALGEOGRAPHICCHANNELS
  • 2. AN INDEPENDENT SUPPLEMENT BY MEDIAPLANET TO THE NATIONAL POST2 · BRAINHEALTHINFO.CA CHALLENGES 5 NEUROLOGICAL CONDITIONS FIRST EDITION, DECEMBER 2014 Publisher: Sonja Draskovic Business Developer: Garrett O’Neill Managing Director: Joshua Nagel Production Manager: Laura Shaw Lead Designer: Matt Senra Designer: Mishelle Menzies Contributors: Benjamin Chacon, Brain Canada, D.F. McCourt, Joe Rosengarten, Joyce Gordon, Kimberley Fehr, Ontario Science Centre, Michele Sponagle, Randi Druzin, Ted Kritsonis Send all inquiries to editorial@mediaplanet.com Photo Credit: All images are from Thinkstock.com unless otherwise accredited. Distributed within: The National Post, December 2014 This section was created by Mediaplanet and did not involve the National Post or its Editorial Departments. Breakthroughs in epilepsy treatment EDITOR’S PICK ■■ ONTARIOSCIENCECENTRE.CA ■■ MYBRAINMATTERS.CA ■■ BRAINCANADA.CA ■■ CYNAPSUS.CA ■■ BRAINCAMPAIGN.CA ■■ WESTONBRAININSTITUTE.CA ■■ KALGENE.COM ■■ EPILEPSY.CA ■■ GENZYME.CA ■■ BIOGENIDEC.COM FOR MORE ON NEUROLOGICAL CONDITIONS FROM OUR PARTNERS Mediaplanet’s business is to create new customers for our advertisers by providing readers with high-quality editorial content that motivates them to act. Mapping Connections An understanding of neurological conditions in Canada Vist us at www.MyBrainMatters.ca Production of this advertisement has been made possible through a financial contribution from the Public Health Agency of Canada Scan above to download a copy of the Mapping Connections report VISIT US ONLINE FOR EXCLUSIVE CONTENT AT BRAINHEALTHINFO.CA MEDIAPLANETCA Landmarkstudyofbrainconditionsin Canadasetsstageforresearchtoaction T he brain allows us to think, move,talk,feel,smell,hear, and see. It connects to our heart and tells it to beat. It connects to our arms and legs and tells them how and when to move. But what if these connections are slow or broken? Alzheimer’s disease, cerebral pal- sy, epilepsy, multiple sclerosis, and Parkinson’s disease are a few of the more than 1,000 identified brain conditions. Brain conditions affect individualsofallages, andestimates suggest more than one in three Can- adians live with at least one of these by brain conditions, marking an un- precedented level of collaboration within the brain community. In Sep- tember 2014,the Government of Can- adaandthebroaderbraincommunity celebratedtheconclusionofthisland- mark study when Canadian Minister of Health Rona Ambrose released the study report,Mapping Connections: An understanding of neurological conditions inCanada. In unveiling the report, Minister Ambrose said, “This is an important base of information needed by gov- ernments, health charities, health- care providers, and communities to ultimately help improve the lives of individuals living with their condi- tions,theirfamilies,andcaregivers.” Mapping connections Key findings included: individuals living with a brain condition share many of the same functional impacts and needs, regardless of diagnosis. Canadians living with a brain condi- tion typically use more health care services than those without a brain condition, or even those with other chronicconditions. Mental health conditions,such as depression and mood and anxiety disorders, are more than twice as common among people with brain conditions than the general popula- tion. Caregivers supporting people with a brain condition are twice as likely to report distress compared to other caregivers. Bringing research to action As Canada’s population grows and ages,more people will be living with brain conditions and experiencing severe disability. Within the next 15 years, in the population over the age of 65, there will be at least twice as many people living with Alzheimer’s disease and other dementias,cerebral palsy,epilepsy,multiplesclerosis,Par- kinson’s disease, spinal cord injury, andtraumaticbraininjury. The new evidence generated by the study, combined with a general increase in awareness, will enable governments and other key stake- holders to take action to reduce the impact of brain conditions in Can- ada. This includes addressing re- maining knowledge gaps, trans- forming policy and programming, and supporting the uptake of suc- cessful innovations. Let’s build on the studytogether and move research to action. Help us by joiningtheCanadianbraincommunity. JOYCE GORDON editorial@mediaplanet.com Joyce Gordon CHAIR, NEUROLOGICAL HEALTH CHARITIES CANADA; CEO, PARKINSON SOCIETY CANADA The brain is the most critical organ in the body, but the least understood. As the lifespan of Canadians increas- es,so does the incidence of age-relat- ed brain diseases. More than 15 per- cent of Canadians 65 and older are living with cognitive impairment including dementia, and this figure is expected to double in the next 20 years. The current economic burden ofneurodegenerativediseasesisesti- mated to be $33 billion peryear.Brain and mental health disorders, which alreadyaffectoneinthreeCanadians, are the major Canadian health chal- lenge of the 21st century. The good news is that our under- standing of the brain, in health and disease,is accelerating,thanks to re- search. Ninety percent of what we know about the brain was discovered inthepast20years.Forexample,com- monmechanismsseemtobeinvolved in disorders that, on the surface, ap- pear quite different: defects in sig- nal transmission from one nerve cell BRAIN CANADA editorial@mediaplanet.com to another may underlie both schizo- phreniaandautism.Wearebeginning to realize that bacteria in a mother’s intestines can have a profound effect on the development of the fetal brain, possibly setting the scene for men- tal illness manyyears later.Never has there ever been a more exciting and fruitfultimeforbrainresearch! Canada leading the way Fortunately,Canadian researchers are highlyproductive,distinguishedbythe qualityoftheirwork.Overall,Canadian researchers rank fifth in the world for thehighqualityoftheirbrainresearch. Canadianscienceranksfirstinpainre- search, second in neuroimaging, and thirdinmentalhealthresearch. Finding solutions to brain and men- tal health challenges has become a global priority. National and inter- national collaborations like the US BRAIN Initiative and European Hu- man Brain Project have been formed toacceleratethepaceofbrainresearch, employing new approaches involving the fusion of genomics,sophisticated imaging techniques, and computer simulationstoobtainacompletebrain “wiringdiagram”. Canada is addressing this chal- lenge through participation in the G7 Global Action Against Dementia in- itiative and investing in a national consortium to tackle neurodegener- ative disorders of aging. In 2011, the federal government established the Canada Brain Research Fund, which willmatchupto$100millioninfunds raised by Brain Canada and its part- ners, to invest in research that is fo- cusedonoutcomestobenefitpatients. Navigating the journey from dis- coverytobetterdiagnosis,treatment, and prevention of brain disorders will require sustained funding and greater collaboration to break down silos and leveraging insights across all disciplines.Changes in policy are required to speed the translation of research into new products and ser- vices through collaborations be- tween academic researchers and industry, encourage uptake of the most promising innovations into the health care system,and increase awareness of what Canadians can do to maintain their own brain health. Unlockingthemysteriesofthebrain will improve health and socioeconom- ic well-being, and provide striking in- sights into what it means to be hu- man.Canada is well positioned to be a stronger leader and global partner in exploringthisultimatefrontier. HOW CANADA’S REMARKABLE RESEARCH PROVIDES NEW HOPE FOR BREAKTHROUGHS ‘MAPPING CONNECTIONS’ REPORT LAUNCH GROUP Canadian Minister of Health Rona Ambrose (centre) and NHCC Chair Joyce Gordon, to her right, officially unveil the report of the National Population Health Study of Neurological Conditions. PHOTO: NEUROLOGICAL HEALTH CHARITIES CANADA conditions. Brain conditions are the leading cause of disability in Canada and can place significant demands on family, friends, and caregivers.Most worsen over time, and while research is making prog- ress and treatments are available for a growing number of brain con- ditions, the majority of conditions still have no known cause or cure. Collaborating for a cause Until now, very little information was available on the scope of brain conditions in Canada as well as the impact and cost of these conditions on individual Canadians, families, healthcaresystems, andsociety.The Government of Canada and Neuro- logicalHealthCharitiesCanada(NH- CC),a coalition of 24 health charities representing thevoice of individuals and families impacted by brain con- ditions, agreed to work together to improve the Canadian understand- ing of brain conditions. From 2009- 2013,with a $15 million investment from the Government of Canada, the National Population Health Study of Neurological Conditions became the largest and most comprehensive study of brain conditions ever con- ductedinCanada. The study involved 130 research- ers and 177,000 Canadians affected “Ninety percent of what we know about the brain was discovered in the past 20 years.” PAGE7
  • 3. NEWS AN INDEPENDENT SUPPLEMENT BY MEDIAPLANET TO THE NATIONAL POST BRAINHEALTHINFO.CA · 3 - - TSX: CTH OTCQX: CYNAF www.cynapsus.ca Restoring Movement with Ease Cynapsus is developing products to manage OFF episodes associated with Parkinson’s disease. OFF episodes are a complication of Parkinson’s disease that leave patients rigid and unable to move and communicate. Cynapsus. Restoring Movement with Ease. P arkinson’s is most widely known as a neurodegenerative disorder that leads to uncontrollable shak- ing and tremors, and while treat- ments have helped those liv- ing with the disease, treating the symptoms with new drug ther- apies may offer some hope. The Parkinson’s Society of Canada projects that up to 200,000 people in the country will be living with the disease, double the number cited 10 years ago. Part of the reason for the in- crease is Canada’s aging population, since Parkinson’s usually begins be- tween the ages of 50 and 65.As many as 5-10 percent of patients are under 40; this is a unique condition called Young Onset Parkinson’s. Hard to diagnose There is currently no cure, despite ongoing research and development, and the onset of the disease is still not fully understood because it is al- so difficult to diagnose early. What is known is that it’s caused by dying neurons in the region of the brain that controls movement.This makes symptoms, or “OFF episodes”, gener- ally unpredictable,saysAnthony Gio- vinazzo,President and CEO at Cynap- susTherapeuticsInc. “It’s a serious rigidity where it’s almost like a complete im- mobilization. Patients end up having to stand, sit, lay down or be somewhere near a wall, making it extremely difficult to be able to move or talk or do things they normally do,” says Giovinazzo. “We’ve had pa- tients tell us of not being able to drive, go golfing, or even able to work because of these episodes. The real danger is the threat of freezing up, falling, and hitting their head or breaking a hip.” Unpredictable ‘OFF’ episodes OFF episodes are triggered bya lack of dopamine in the brain and are broken down into four types.The most com- mon among them is morning akin- esia, where patients awake with symptoms after having no treatment overnight.Theinitialmorningdoseto offset that tends to take 30-120 min- utes to kick in, which makes it the mostdifficultepisodetotreat,hesays. Other episodes that can prove problematic are when treatment wears off, and the unpredictable OFF fluctuations that can occur at any time during the day or dose cycle. Giovinazzo believes this is particularly important to note be- cause Parkinson’s patients will eventually suffer from all of them, and their effects can be residual, leading to anxiety,depression,and a sense of loss of control. Future efforts In Canada, there are no approved medications for the treatment of OFF episodes. In most of the world, the most effective treatment requires a syringe injection, usually adminis- teredbyacaregiverorrelative. “Cynapsus is actively pursuing the development of new medica- tions that will help manage OFF episodes in with a delivery sys- tem that is easy to use,” says Gio- vinazzo.The development of medi- cations that are not a burden to take and act effectively are import to the patient with Parkinson’s disease. Our efforts are focusing on making that a reality.” TED KRITSONIS editorial@mediaplanet.com InnovationsinParkinson’stherapy “The Parkinson’s Society of Canada projects that up to 200,000 people in the country will be living with the disease, double the number cited 10 years ago.” PARKINSON’S FACTS Parkinson’s disease is a chronic progressive neurological disorder that is life altering. The symptoms include tremor, rigidity, slowness and stiffness of muscles; impaired balance and difficulty with walking; loss of volume and clarity of speech; tendency to shuffle when walking; handwriting difficulty.  Nearly 100,000 Canadians have Parkinson’s disease with approximately 5,500 new cases diagnosed each year in Canada.  Brain disease and disorders (like Parkinson’s disease) will surpass cancer and heart disease as the leading cause of death and disability to Canadians by 2040 yet at present there is no national strategy to address growing concern.  40% of patients develop Parkinson’s before the age of 60. Many are diagnosed in their 20s, 30s, and 40s.  Brain disease and disorders like Parkinson’s cost the Canadian health care system more than $30 billion annually.  The area of the brain affected in Parkinson’s is the substantia nigra where a chemical mes- senger called dopamine is produced. The presence of dopamine allows nerve impulses to travel smoothly from one nerve cell to another. These nerve cells are the ones which transmit messages to the muscles of the body to begin voluntary movement. When dopamine levels fall below 50%, the symp- toms of Parkinson’s appear.
  • 4. INSPIRATION AN INDEPENDENT SUPPLEMENT BY MEDIAPLANET TO THE NATIONAL POST4 · BRAINHEALTHINFO.CA ALTERNATIVE TREATMENTS FOR EPILEPSY: A LIFE RESTORED D.F. MCCOURT editorial@mediaplanet.com W hitney Goulstone was diagnosed with epi- lepsy at 19 years old, though she had al- ready been suffering mild seizures for years. Over the next decade, her condition would prove non-respon- sive to medication and her seizures would grow steadily worse to the point where,while she was pregnant with her second child, she was hav- ingfivetosevenviolentseizureseach day.Her life had been entirely taken overbythedisease.Whitneyhadlong been told that she was unlikely to be agoodcandidateforepilepsysurgery, but she had to be sure.That’s when she went into the Krembil Neurosci- ence Centre at Toronto Western Hos- pital for an evaluation at their Epi- lepsyMonitoring Unit. “My quality of life was just zero” “Epilepsy defined me,” Whitney says. “I couldn’t go anywhere on my own. I wore a helmet for years. I was in a wheelchair. I couldn’t even lift my child. I was at the hospital so often thatthedoctorsaidmyfileneverwent back in the drawer.My quality of life wasjustzero.” Thepossibilityofasur- gical treatment was a ray of hope for her, a chance to bring some sense of normalcybackintoherlife. The Epilepsy Monitoring Unit was able to localize Whitney’s neuro- logical condition to a specific re- gion of her brain.It turned out to be a rare variety of the disease and the location in the brain presented some surgical challenges,but the surgical team told Whitney that an oper- ation was possible.This team includ- ed Dr.Taufik Valiante,Co-Director of the Epilepsy Program at the Krembil Neuroscience Centre who says that, though Whitney’s particular epi- lepsy may have been of a rare type, her storywas all too common. One Ontarian in a hundred is living with epilepsy About one percent of all Ontarians have epilepsy and about 30 percent of those will find that, like Whit- ney’s, their condition does not re- spond to medication. That’s tens of thousands of people in this prov- ince alone suffering through person- al versions of Whitney’s story. About halfofthesepeoplewouldmakegood candidates for surgical intervention, but only two percent of those actual- lyreceive the surgery. “There’s a feeling overall that sur- gery is always the last resort,” says Dr. Valiante. “On average it takes a patient 20 years from their first seiz- ure until they are finally referred for surgery, when we know that it only takes about two years to determine if someone is not going to respond to medication.” Only by educating people with epilepsy about the high successratesandlowrisksofmodern surgical treatments can they be fully empowered to choose the treatment plan that is best for them. “Even if someone ultimately decides they don’twantsurgery,”saysDr.Valiante, “it’s been shown that their quality of life living with epilepsy can be im- proved simply by having this infor- mation and knowledge.” A new strategy of epilepsy care Forthosewhodochooseasurgicaltreat- ment plan,the newProvincial Strategy for Epilepsy Care seeks to dramatically increase access to epilepsy care cen- tres around the province by increasing their capacity. The Krembil Neurosci- enceCentrespecificallyhasrecentlyre- ceivedfundingtodoublethenumberof beds in the Epilepsy Monitoring Unit, dramatically reducing wait times for evaluationandsurgery. This improved access to epilepsy surgery holds the promise of an en- tirely new life for thousands of On- tarians like Whitney Goulstone. It’s been four years since Whitney’s sur- gery;fouryearswithoutasingleseiz- ure. I can hear her tearing up. “This surgery gave me my life back,” she says.“I can hold mychildren again.” ■■ A human brain weighs about 1.4 kilograms (three pounds) and is mostlymadeofwater. ■■ The brain and the rest of the nervous system run on electricity, but at low levels. Brain signals in- volve less than one-tenth the volt- ageofanordinaryflashlightbattery. Senses ■■ Whenyousmellsomething,your nose is sensing chemicals in the air. It sends messages to a brain area called the olfactory cortex, which can distinguish between about 20,000scents. Memories ■■ The amygdala makes sure highly emotional moments are “burned in- to”yourmemory. ■■ The hippocampus — a part of the brain that is used to form long-term memoriesandmentalmaps—canac- tuallygrowwithconstantuse. Changes ■■ Before a child is born,his or her brain cells multiply rapidly. On average, half a million neurons form every minute during the first fivemonthsinthewomb. ■■ After a peak in brain functioning in your 20s, the number of neur- al connections gradually declines, and over time, your memory may becomeabitlessreliable. 21st-century ■■ Doctors can now activate (or de- activate) certain brain regions by surgically inserting a wire into the brain and sending in pulses of electricity with what’s called deep brain stimulation (DBS).More than 80,000 people have already used DBS to treat Parkinson’s disease, andithasalsobeenusedtotreatob- sessive-compulsivedisorder. ONTARIO SCIENCE CENTRE Compiled with information from Ontario Brain Institute editorial@mediaplanet.com The inside story on your brain DON’T MISS INSIDE THE OPERATING ROOM Dr. Taufik Valiante, Neurosurgeon and Co-Director of KNC’s Epilepsy Program, performs a type of specialized brain surgery that offers relief for people with drug-resistant epilepsy. PHOTO: UNIVERSITY HEALTH NETWORK Over 100,000 Ontarians are currently living with epilepsy. Dailyseizureskeepmanyfromlivingthelifetheywanttolive,andtoofew areawareofthepotentialreliefsurgerycanprovide.
  • 5. INSPIRATION AN INDEPENDENT SUPPLEMENT BY MEDIAPLANET TO THE NATIONAL POST BRAINHEALTHINFO.CA · 5 Eat a well-balanced diet Abalanceddietincludesagoodsup- ply of omega-3 fatty acids from fish (and low amounts of saturated fats) as well as fruits and vegetables rich in antioxidants,vitamins,and min- erals. The sum of your diet, rather than individual foods or nutrients, is more important for maintaining brainhealth. Manage your stress Too much stress makes your brain work less efficiently.Two brain re- gions are particularly sensitive to stress: the hippocampus, which is responsible for learning and mem- ory, and the prefrontal cortex, which is responsible for our ability tomulti-task. Get enough sleep Sleep is necessary for the brain to function, and helps you learn new information. In the short-term, sleep deprivation causes memory problems, impaired immune sys- tem function,attention deficit,and even hallucinations. Chronic sleep deprivation is associated with an increased risk of heart disease,type 2diabetes,andobesity. Take your brain for a walk In addition to being good for your heart, waistline, and muscles, ex- ercise is good for your brain. Did you know that people who exer- cise regularly are 30-40 percent less likelyto develop dementia (likeAlz- heimer’s disease) and 25 percent lesslikelyofhavingastroke? Train your brain Strengthen your brain by doing regular mental exercises. Benefits of brain training are seen in people ofallages. For maintaining your brain health TIPS BIOGEN IDEC and the BIOGEN IDEC logo are trademarks of Biogen Idec. © 2014 Biogen Idec. Through cutting-edge science and medicine, Biogen Idec discovers, develops, and delivers innovative therapies for the treatment of relapsing forms of MS. Visit biogenidec.ca or call 1-866-359-2502. Caring deeply, changing lives. Whenfacingadiseaselikemultiple sclerosis,youareyourownbestadvocate Mother of two takes charge of her disease, doesherresearch, andplaysan activeroleinher treatment. KIMBERLEY FEHR editorial@mediaplanet.com T he pins and needles start- ed in her right hand. Car- rie MacLean was a 28-year- old newlywed, working in a high-stress job as an IT team lead. Within four days she lost function- ality in her hand. She couldn’t even pick up a pen.But then she gradually returned to normal, like the night- mare never happened. Nearly two years later,she had an- other attack,and received a diagno- sis: multiple sclerosis (MS). “I was petrified,” she recalls. “I thought I had a couple of years to live – it was a death sentence.That’s what I thought.” Understanding MS She threw herself into learning everything she could about MS.The more she read, the more she real- ized: “This is not a death sentence. This disease is manageable.You can live a long life.” MacLean has the most common variation of the disease — relaps- ing-remitting MS — which is char- acterized by attacks,followed by re- mission. The danger is the disease might deteriorate to secondary-pro- gressive MS and increasing disabil- ity, which happens to about half of people within 10 to 20 years,accord- ing to the MS Society of Canada. Early detection AccordingtotheblogbyDr.KarenLee, An Inside Look at MS Research, there is, however, a silver lining for people with progressive MS aswell as relaps- ing-remitting MS — early treatment. Research suggests that there is grow- ing evidence showing that treating MS as early as possible can have a sig- nificant impact in long-term treat- ment response,qualityof life,and dis- easeprogressioninpeoplewithMS. Ten years have passed for Mac- Lean and you can’t tell she has MS. People don’t see the pins and nee- dles. She doesn’t limp. “I don’t look like I have MS. My life is relatively normal,” says MacLean. She lives in Waterdown,Ont.with her husband and two daughters,who she had after her first MS attack.She does yoga and attends an MS support group.But life has changed. When she realized stress and lack of sleep were her triggers for at- tacks, she left her job to raise her two girls. Finding the right drug The first MS drug she tried made her anemic. The second required daily injections. Terrified of nee- dles, her severe panic attacks meant it wasn’t an option. When a new oral treatment op- tion was coming to the Canadian market, she knew that was the drug she wanted. She says stud- ies showed it reduced relapses and the severity of attacks by approxi- mately 50 percent. “The research is changing so fast. You need to be your own best advo- cate,” MacLean said. She brought her research to her neurologist and he teased her. “He said, ‘How do you know so much?’ I said,‘BecauseI’vedonemyresearch.’” Carrie experienced mild side ef- fects like flushing and nausea, which vanished after two months, and she has been happily on the drug ever since. Her advice for new MS patients is that they do their own research on legitimate websites. “In doing that, you become less scared,” she says. CARRIE MACLEAN AND HER FAMILY It is important to seek early treatment for MS and determine for yourself which treatment is best for you. PHOTO: CARRIE MACLEAN FOR MORE TIPS ON MAINTAINING BRAIN HEALTH, VISIT BRAINHEALTHINFO.CA ONTARIO SCIENCE CENTRE Compiled with information from Ontario Brain Institute editorial@mediaplanet.com “This is not a death sentence. This disease is manageable. You can live a long life.”
  • 6. INSIGHT AN INDEPENDENT SUPPLEMENT BY MEDIAPLANET TO THE NATIONAL POST6 · BRAINHEALTHINFO.CA KalGene Pharmaceuticals committed to develop a disease modifying therapy for Alzheimer’s The National Research Council of Canada (NRC) and KalGene Pharmaceuticals are co-developing a novel therapeutic molecule against Alzheimer's disease. KalGene is collaborating with the Centre for Imaging Technology Commercialization (CIMTEC) and the Montreal Neurological Institute to access the most advanced diagnostic techniques. “Validating this new Canadian-developed Alzheimer’s therapy with the best imaging technology available will be an exciting development for clinicians who must manage this disease today without effective treatments,” says neurologist at McGill University Dr. Rosa-Neto MD, Ph.D. “We are committed to co-developing new treatments with NRC against diseases that have traditionally been difficult to treat,” says Dr. Yoganathan, KalGene, CEO. "This multi-disciplinary collaboration brings new treatments one step closer to people living with Alzheimer’s." For additional information on KalGene’s efforts to develop new treatments for Alzheimer’s disease, please contact nathan@kalgene.comwww.kalgene.com PRINCIPAL INVESTIGATORS Dr. Gary Armstrong Dr. Philip Barber Dr. Robert Bartha Dr. Sandra Black* Dr. Michael Borrie Dr. Jonathan Brotchie Dr. Mallar Chakravarty* Dr. Howard Chertkow Dr. Louis Collins Dr. Pieter Cullis Dr. Alain Dagher Dr. Karen Davis Dr. Alan C. Evans Dr. Elizabeth Finger* Dr. Corinne Fischer Dr. Morris Freedman Dr. Mervin Gornitsky Dr. Robin Green Dr. Barry Greenberg Dr. Ariel Graff Guerrero Dr. Lili-Naz Hazrati* Dr. Nathan Herrmann Dr. Sylvain Houle* Dr. Mary Jenkins Dr. Mandar Jog Dr. Tom Johnston Dr. Julia Keith Dr. Alex Kiss Dr. Erin Knock Dr. Michael Kovacs Dr. Sanjeev Kumar Dr. Krista Lanctot Dr. Blair R. Leavitt Dr. Penny MacDonald Dr. Don Mahuran Dr. Mario Masellis* Dr. Mary Pat McAndrews Dr. David Mikulis Dr. Philippe Monnier Dr. Kieran Murphy Dr. Joanne Nash Dr. Gagan Panigrahi Dr. Stephen Pasternak Dr. Hemant Paudel Dr. William Pavlosky Dr. Christopher Pearson Dr. Bruce Pollock Dr. Jens C. Pruessner Dr. Ekaterina Rogaeva* Dr. Tony Rupar Dr. Pablo Rusjan Dr. Tajas Sankar Dr. Hyman Schipper Dr.MichaelSchlossmacher* Dr. Monika Schmidt Dr. Eric Smith Dr. Antonio Strafella* Dr. Keith St. Lawrence Dr. Stephen Strother Dr. Peter Stys Dr. David Tang-Wai* Dr. Carmela Tartaglia* Dr. Charles Tator Dr. Neha Thakkar Dr. R. Terry Thompson Dr. Rommel Tirona Dr. Julianna Tomlinson* Dr. Shigeki Tsutsui Dr. Aristotle Voineskos Dr. Yu Tian Wang Dr. Donald Weaver Dr. Jennie Wells Dr. Alan Wilson* Dr. Zhengrui Xi Dr. Lisa Yu Dr. Beibei Zhao Dr. Lorne Zinman Dr. Guangyong Zou WE CONGRATULATE OUR YEAR-TO-DATE AWARDEES A gifted group representing some of most accomplished experts in the world. The Weston Brain Institute is honoured to support Canadian neuroscientists. *holds multiple grants 00IN SUR Epilepsy affects 1in100 Canadians. …It most often strikes in adolescence, resulting in a life-long battle against seizures and in some cases death. Help find a solution. Donate to epilepsy research at www.epilepsy.ca. Call 1-877-734-0873 or mail donations to: Epilepsy Canada, 2900 John Street, Suite 2B, Markham, ON L3R 5G3Call 1-877-734-0873 or mail donations to: Epilepsy Canada, 2900 John Street, Suite 2B, Markham, ON L3R 5G3 JOE ROSENGARTEN editorial@mediaplanet.com A n innovative approach for funding research is aimed at accelerating the development of safe and effective breakthrough treatments for neurodegenerative diseases and could be a game changer foragingCanadians. Recent advances in healthcare are helping Canadians to live longer than ever before. But, during this period of great medical progress, there has been a distinct lack of treatments for neurodegenerativediseasesofaging. New approach to funding essential research There are currently no cures for dis- eases such as Alzheimer’s, Parkin- son’s and amyotrophic lateral sclero- sis(ALS),andtreatmentstoslowdown theseconditionsarenotaseffectiveas theyneedtobe. In2013,approximate- ly2.9 million Canadianswere directly impacted by these conditions, either as patients or caregivers.In a genera- tion,thisnumberisestimatedtogrow to 16.4 million Canadians, while the economic impact of these diseases to Canada is estimated to grow from $28 billionto$215billionperyear. By supporting high-risk, high re- wardresearch projects,aleadingCan- adian funding agency is addressing this critical issue in a new and com- pellingway. “Our support,anchored byaworld- class scientific advisory board, our approach, built around rigorous business principles, and an innova- tive operating model, will allow for the kind of complex research that needs to be done now,and to be done more quickly,” explains W. Galen Weston, Chairman and President of The W. Garfield Weston Foundation, which launched the Weston Brain Institute, a granting agency direct- ly supporting Canada’s neurosci- ence research community. “ We are determined to be the catalyst in a transformational new chapter in the fight against brain diseases.” Bridging the valley of death Three main phases of research are needed to develop a new treatment: basicresearch,translationalresearch and clinical trials. Basic research is relatively well-funded and, at the other end of the spectrum,large bio- tech and pharmaceutical compan- ies resource late stage clinical trials. Translational research though, is underdeveloped; a situation that it is often referred to as the translational gap or “valleyof death”. “In our view,driving forward key breakthroughs in translational re- search is critical to finding solu- tions to this problem. Current- ly, the lack of resources and skills means some of the most promis- ing ideas are stalled or stopped in the “valley of death,” explains Alex- andra Stewart, Executive Direc- tor at the Weston Brain Institute. “We are focused on bridging that gap to make sure that what could be breakthrough treatments have a chance of making it to patients.” Dr. Ekaterina Rogaeva has been conductinggeneticresearchonavar- iety of neurodegenerative diseases at the University of Toronto since 1992 and has contributed substantially to the development of effective gen- etic testing of different forms of de- mentia. Without the willingness to support high risk,high reward work, Dr.Rogaeva would have struggled to make such an impact. Accelerating research on neurodegenerative diseases in Canada COLLABORATING FOR A CURE Chair of the Advisory Committee of the Weston Brain Institute, Dr. Andres Lozano (left) and W. Galen Weston (right), President and Chairman of The W. Garfield Weston Foundation, which launched the Weston Brain Institute, at a special event in Toronto. PHOTO: TOM SANDLER “Iwasworking on a particular gene that had just been discovered so there wasnopreliminarydata,”Dr.Rogaeva, the Weston Brain Institute award- ee explains. “We wanted to develop a noveltechniquetouseinformationas a potential biomarker.The Institute’s fresh approach to funding proposals meant they considered the potential of the research and I was granted re- sources quickly, which is unique. It wasrisky,butithasworked.” Collaborating towards success Thereisanarrayofmeaningfulcollab- orations between funding institutes and neuroscience research commun- ity in Canada.The Institute’s unique, cross-disease focus is helping to bring together researchers from different silos to help spark breakthroughs,and the fast,flexible and interactive grant- ing process is allowing funding deci- sionstobemadequicklyandeasily. “Science is a field where collabor- ation is extremely important, it re- quires teams with specific expertise,” explains Dr.Andres Lozano, Chair of theWeston Brain Institute’sAdvisory Board.“Wehaveworld-classscientists in Canada and by funding them to work on neurodegenerative diseases ofaging,wewillacceleratethepathto thediscoveryofnewtreatments.” “We have world-class scientists in Canada and by funding them to work on neurodegenerative diseases of aging, we will accelerate the path to the discovery of new treatments.”
  • 7. INSIGHT AN INDEPENDENT SUPPLEMENT BY MEDIAPLANET TO THE NATIONAL POST BRAINHEALTHINFO.CA · 7 Late last year, British Prime Minister David Cameron led the world’s first G8 Demen- tia Summit in London. Speak- ing to an audience of global dementia specialists, he de- clared: “The truth is that de- mentia now stands alongside cancer as one of the greatest enemies of humanity.” He was not exaggerating. Accord- ing to a Statistics Canada report,Alz- heimer’s disease, the most common formofdementia,istheseventh-lead- ingcauseofdeathinCanada. Alzheimer’s disease is a fatal, pro- gressive brain disease that destroys brain cells and causes severe mem- ory impairments. For individuals who suffer from the disease,everyday taskssuchaspreparingamealbecome challenging. As a result,it not only af- fects individuals with the disease, but familymembersandsocietyasawhole. The need for investment Given the devastating nature of the disease and the impact it has on so- ciety, Alzheimer’s disease research is achinglyslowandgrosslyunderfund- edcomparedtootherdiseases. “When you look at other diseases, such as cancer and HIV/AIDS,there are majorinvestmentsinresearchandsci- entistsarecontinuallydiscoveringnew treatments,” says Mimi Lowi-Young, CEO of the Alzheimer Society of Can- ada.“We need the same thing to hap- penwithAlzheimer’sdisease.” Currently 747,000 Canadians are liv- ingwith Alzheimer’sdiseaseandother forms of dementia. By 2031,the num- berisexpectedtoreach1.4million. “It’s urgent that we recognize that we need to invest a major amount of moneyinto dementia research,” Lowi- Youngsays.“Raisingawarenessandin- vestmentsarevital.” Lack of funding As baby boomers age, the number of people with Alzheimer’s will inevit- Finding a cure for Alzheimer’s disease ably increase,so addressing the need for research and innovations in the discovery and development of Alz- heimer’s disease therapeutics is be- comingincreasinglycrucial. However a lack of sustained funding is preventing researchers and drug de- velopers from doing thework thatwill eventuallyconquerthedisease. “Right now, we are spending around 30 billion dollars annual- “A lot of people are working hard to come up with better medica- tions,” says Michael Poulter, Pro- fessor and Director of the graduate neuroscience program at the West- ern University's, Robarts Research Institute. He notes that small bio- pharmaceutical startups are now devoting resources to the develop- ment of anti-seizure medications. Himalayan flower extract a possible treatment Poulter has launched his own start- up, OB Pharmaceuticals, hoping to bring to human trials the most prom- isinganticonvulsanthehaseverstud- ied. It was found in the root extract from a small flower that grows high in the Himalayas.A tea brewed from the plant’s crushed roots has report- edly been used to control seizures for centuries in that region. Pakistani scientists (lead by Professor M. Iqbal Choudhary) who isolated the active component and developed the manu- facture of it introduced the molecule toPoulterin2009. Of course, this molecule isn’t the only one attracting attention. “Just the other day I talked to some- one who is interested in using extract(s) from the marijuana plant to control seizures,” Poulter ex- plains.“The hope is that an extract could one day be used as an add-on, a supplement to established medi- cation that many not be working as well as hoped.” While a new anti-seizure medica- tion might be discovered through a concerted effort,it might also be dis- covered by accident. “Sometimes a use for a drug is just stumbled up- on,” Poulter explains. “For example, in the 1950s a drug that was thought to be an antihistamine turned out to J aime Weatherbee, Man- ager of Donors and Admin- istration of Epilepsy Can- ada, still remembers the email. It was one of doz- ens in her inbox that September morning but it was nothing like the others. “I don’t know why I am writing this,” a man wrote, “I just feel I should tell somebody what is about to happen.” He went on to paint a bleak picture of his life.De- bilitating seizures prevented him from working and he was unable to support his child.He spent most of his time alone. “Soon,” he wrote, “I will take my own life.” Weatherbee immediately called a suicide prevention hotline in the man’s area. She was told they couldn’t help unless he contacted them directly. She sent an email to the man, urging him to make the call.No response. She contacted the RCMP, who managed to reach him. Two months later, she describes the incident as “paralyzing.I mean, what could I do? I just felt helpless.” Great strides in treatment About 30 percent of people with epi- lepsysufferregularseizures—dozens a day,in some severe cases — and the impact on their lives ranges from dis- ruptive to debilitating. The unfortu- nate few who also suffer from un- related mental health problems are sometimes overwhelmed by despair. Every two months, Epilepsy Canada receives a message from someone contemplating suicide. But there is hope. We’ve seen great strides in the treatment of this neurological disor- der in recentyears. Today,most of the 300,000Canadianswhohaveepilepsy livefulllives—andthesenumbersare expectedtogrow. With the number of Canadians suffering fromAlzheimer's disease and other forms of dementia expected to double by 2025,investing in research for a cure is crucial. BRIDGING THE LINK BETWEEN MENTAL HEALTH AND EPILEPSY BREAKTHROUGHS IN EPILEPSY TREATMENT Biopharmaceutical companies are researching the positive effects of various plant extracts towards finding new anti-seizure medications. be an antipsychotic that was effect- ive in treating schizophrenia.”And of course, Viagra was intended to treat high blood pressure. It was just a happy coincidence that it could treat erectiledysfunctionorimpotence. Breakthrough ‘just around the corner’ Six years ago, the United States Food and Drug Administration (FDA) ap- proved an anticonvulsant that pre- ventsseizuresbydecreasingabnormal excitement in the brain. Poulter says the introduction of this drug, Levet- iracetam (sold as Keppra),was the last big breakthrough in the treatment of epilepsy. Given the current efforts of researchers and the advocates who support them,he believes another big breakthroughisjustaroundthecorner. That is music to the ears of Gary Collins, Executive Director of Epi- lepsy Canada. “As someone living with epilepsy, I always feel badly for those whose lives have been deeply affected by our disorder,” he says.“I’m most fortunate that mine is managed effectively through medication and I can live a near normal life.” Jacques Brunelle,President of the Board of Epilepsy Canada, acknow- ledges the importance of improved treatment for seizures. That, he says,combined with efforts to elim- inate the stigma associated with epilepsy, should go a long way to improving the lives of people living with it. “With the help of so many people in so many ways,” he says, “I’m sure we’ll find a cure.” “With the help of so many people in so many ways, I’m sure we’ll find a cure.” RANDI DRUZIN editorial@mediaplanet.com ly to maintain Alzheimer’s patients through care-giving. We need to do more to accelerate the discovery and development of new drugs to treat and prevent Alzheimer’s disease,” says Dr. T. Nathan Yoganathan, CEO of KalGene Pharmaceuticals Inc., a privately-held Canadian pharma- ceutical company developing an Alz- heimer’s drug. “With better treat- ments for Alzheimer’s disease, the opportunity for health care system savings over time is immense.” Addressing the misconceptions Part of the reason research intoAlz- heimer’s disease has attracted few- er public and private dollars in the past is that Alzheimer’s disease is still attached to a number of wide- spread misconceptions, such as the belief that dementia is simply a natural part of aging. These kinds of misconceptions can standinthewayofourabilitytounder- stand and help peoplewho suffer from Alzheimer’sdisease. “RaisingpublicawarenessaboutAlz- heimer’s disease is critical. There’s a huge amount of stigma about the dis- ease,and it’s really important that we address that stigma through educa- tion,”saysLowi-Young. Moving forward Despite chronic under-investment in Alzheimer’s disease research, col- laborative partnerships between re- searchers and clinicians around the world have led to many groundbreak- ingdiscoveriesinthestudyofdemen- tia.Manyofthesediscoveriesarehap- peninghereinCanada. “Canadian companies are making enormous strides in developing treat- ments for Alzheimer’s disease. But public-private partnerships are need- ed to accelerate funding into the de- velopment of drugs and therapeut- ics,” says Dr.Yoganathan.“The fact is, the more that we get public attention about what we need to do, the faster wecanfindacure.” BENJAMIN CHACON editorial@mediaplanet.com “There is an urgent need to recognize that we need to invest a major amount of money into dementia research.” Today, 747,000 Canadians have Alzheimer’s disease or other dementia. This number will nearly double to 1.4 million in less than 20 years. After age 65, the risk of dementia doubles every five years. While age is a major risk factor, dementia also occurs in people in their 40s and 50s. As of 2008:  71,000 Canadians aged 65 and younger had dementia.  50,000 Canadians aged 50 and younger had dementia. Dementia can lie dormant in the brain up to 25 years before the first symptoms appear. ALZHEIMER’S IN CANADA PHOTO AND CONTENT SOURCE: ALZHEIMER SOCIETY OF CANADA Starting in January, thousands of Canadians participate in the annual Walk for Memories in communities across Canada to raise funds for local Alzheimer Society programs and services. January is also Alzheimer Awareness Month.
  • 8. INSPIRATION AN INDEPENDENT SUPPLEMENT BY MEDIAPLANET TO THE NATIONAL POST8 · BRAINHEALTHINFO.CA I n2004,Christianereceivednewsthat would change her life forever. She was diagnosed with multiple scler- osis (MS), an incurable, often disab- ling,disease that affects an estimated 100,000Canadians. Signs and symptoms The symptoms of MS vary greatly from person to person and they can appear suddenly out of the blue — fatigue, difficulty in walking, trem- ors, dizziness, and cognitive impair- ment to name a few. For Christiane, the first sign came eight years earlier when she woke up one morning and was unable to see out of her left eye. Her doctor said it could be a sign of MS.“I didn’t like that word at all,” she recalls.“Myfirstreactionwasdenial.I refused to even think about it.” Then a few years later, at the be- ginning of a ski trip, her left leg went numb. It was weak and lacked strength.Determined to not let it ruin her vacation, Christiane went skiing anyway,using her hands to move her limbwhereitneededtobe. After this second incident, Chris- tianewasreferredtoaneurologistwho was able to confirm a diagnosis of re- lapsing-remitting MS (the most com- mon of the four types), following a Magnetic Resonance Imaging (MRI) test. Immediately, she assumed the worst:“IthoughtI’dbelivingmylifein awheelchair.Iwasinshock.” A manageable condition ButthemoreshelearnedaboutMS,the moresherealizedthatitwasamanage- able condition through disease-modi- fying drugs and a healthylifestyle. She didn’t have to give up her active life- style. She could still do the things she loved — downhill skiing, cycling, ten- nis, swimming,travelling to countries like Austria (her favourite) with her husband, and running her own mar- ketingandgraphicdesignagency. She was referred to an MS clinic for treatmentwhereshewasprescribedan injectabledrugtoslowtheprogression of the disease.In March 2014,after an annual appointment with her doctor, she switched to a once-a-day oral op- tion — one she had heard about two or threeyearspriorthatwasbeingstudied substantiallybyCanadianneurologists. “Iwasthrilledwhenitbecameavail- able. I would no longer have to have dailyinjections,” she says.“I didn’t like them. Foradecade,theywereconstant remindersthatIhadaseriousdisease.” There were practical considerations as well. Oral treatment meant an end to the pain and bruising she experienced attheinjectionsites. New and convenient options And,for someone like Christianewho loves to explore theworld,the change was freeing. She no longer has to worry about the hassle that comes with traveling with hypodermic nee- dles,orwith cleaning up broken glass in a hotel due to a droppedvial. “The oral medication has made a big difference in my life,” she says. “It’s so convenient. I take my pills each morning and, in seconds, I’m ready to begin my day. I no longer have side effects,like constipation,to contendwith. Ifeelgreat.” Canada has the highest rate of MS disease in the world, but thankfully has some of the top MS researchers. Some of Christiane’s time is devoted to planning community fundraising events to help find a cure for MS.The irony is that,long before her diagno- When Lara was first crowned Canadian boxing champion in 2002, she had no way of knowing that her life’s toughest battle would take place out of the ring and that her opponent would be multiple sclerosis. Growing up, Lara had always been an athlete, always searching for the next competitive sport to conquer. First,she wanted to be a bodybuilder, then it was kickboxing.But it didn’t take long for Lara to discover her true sporting passion: boxing. “I boxed from when I was 18 to 24 and I loved it,”saysLara,now35.“Itrainedallthe time,was always in the gym,and ran six times aweek.” An unexpected diagnosis Although only diagnosed with MS in June 2009,Lara first experienced ser- ious symptoms back in 2002,the year that she had her first MRI scan — the results of which were abnormal. But her MSwasn’t picked up,and over the intervening eight years Lara experi- encedsporadicyetintensesymptoms. In2003,Larawasn’tabletotrainfor the most of the year because of her symptoms.She went to the Canadian Boxing Championships anyway,feel- ing sick, and won, also receiving the award of Best Female Boxer of the Tournament.Lara had,effectively,be- cometheCanadianboxingchampion while sufferingwith MS. “In those years, I would go through periods of a couple of months when I experienced numb- ness of my whole body,” says Lara. “I went down the road of it being an iron deficiency, and was getting iron injections at one point, but nothing was working.” Lara went back to the neurologist where she had her first MRI and ex- plained what was happening, ex- pecting to hear that nothing was seriously wrong. It was then that she heard the life changing words,‘I thinkyou have multiple sclerosis.’ “I tried to continue myjob in corporate communications but I was sleeping under my desk, crying all time and sometimes I couldn’t move for a few days,” Lara says.“I had to leavework, I just couldn’t focus.” Finding the right treatment After diagnosis, Lara’s symptoms worsened and her doctors prescribed a series of powerful medications.She tookherfirstMSmedicationforabout a year,but it had a lot of nasty,flu-like side effects and also caused Lara se- vere depression. She was prescribed something different but again, the newtreatmentwasnotsuccessful. “I got very bad anxiety and had a really bad relapse, which included the numbness again,” says Lara.” I was not able to type or hold things in my hands and I was having trouble thinking and remembering things.” A new MRI scan confirmed what Lara was feeling, the medica- tions weren’t working. The right to choose It was then that Lara’s doctor gave her some treatment options and the freedom to choose her own medica- tion. She decided to go on a clinical trial for a new drug (which has been studied in multiple sclerosis since 1999)with a unique approach to dos- ing.It was a tough decision but one that Lara thought she should take. Lara researched her treatment op- tions and decided that the benefits of the new medication outweighed the risks or side effects,and that this treatment had the strongest poten- tial to alter her MS prognosis. In the first year of the trial for the new drug, Lara had one daily in- fusion over a period of five consecu- tive days and,in the second year,one dailyinfusion over three consecutive days.Since having the second year’s dose,Larahasnotneededanyfurther treatment to stop the progression of MS, although she does still need to treat some of the symptoms. Lara’s condition is currentlymuch better than she ever thought it could be. Her life has changed dramatic- ally since being diagnosed with MS. “I can run again now, which is fan- tastic; however, if I ran every day I would trigger huge amounts of ten- sion as well as fatigue and would do nothing else,” says Lara. One thing’s for sure,though: Lara will continue to find the courage to fight her condition.“The way I fight is by taking opportunities when I get them,” she says,“like going into a clinical trial for a drug that sounds the most promising of my big-gun options, and by constantly adapt- ing, trying different angles and ac- cepting things I’d rather not.” Former Canadian boxing champion talks about her battle with multiple sclerosis JOE ROSENGARTEN editorial@mediaplanet.com Living with multiple sclerosis without fear MICHELE SPONAGLE editorial@mediaplanet.com ■■ Canada has the highest rate of multiple sclerosis (MS) in the world. ■■ Affects an estimated 100,000 Canadians. ■■ Every day, 3 people are newly diagnosed. ■■ Usually diagnosed between the ages of 15 to 40. ■■ Most common neurological disease affecting young adults in Canada. ■■ Estimated cost to the Canadian economy is more than $1 billion per year. MS IN CANADA Every year more than 40,000 Canadians in more than 160 communities support the MS Walk and raise vital funds for people living with MS. PHOTO: MS SOCIETY ONTARIO DID YOU KNOW? sis, Christiane donated to the Mul- tiple Sclerosis Societyof Canada. “It was a disease that scared me,” she explains. “Now that I’ve been diagnosed, I want to do more than just send a cheque.I’ve benefitted so much from what life has given me.I want to give back.” It helps Christiane face every day with optimism and a one-day-at- a-time attitude. “I’m living my life without fear. I’m doing what I want to do.And I’m happy.” “The way I fight is by taking opportunities when I get them. Like going into a clinical trial for a drug that sounds the most promising of my “big-gun” options, and by constantly adapting, trying different angles and accepting things I’d rather not.” THE MS WALK A celebration of the power we have to change the lives of Canadians with MS. Find out what you can do in your community to make a difference! PHOTO: MS SOCIETY ONTARIO