1. Newsletter of The ALS Association - DC/MD/VA Chapter
VOICET H E
Fall 2016
The ALS Mobile Unit, providing mobile AT support. COMING SOON!
ASSISTIVE
TECHNOLOGY
CAMPAIGN
Founded in 1991, our Chapter has been
meeting the ever-changing needs of
people with ALS in Washington D.C.,
Maryland and Virginia for 25 years.
Today, the Chapter serves nearly 700
families free of charge and is recognized
as one of the leading Chapters of The
ALS Association—paving the way for
innovation and growth. However there is
still much work to be done.
Despite the Chapter’s far reach, there are
still individuals in our region who aren’t
receiving the care they need, particularly
in Assistive Technology (AT) support.
Did you know that 75% of people with
ALS will lose the ability to speak? That
means that those people will rely on the
help of Assistive Technology to continue
to communicate with their caregivers
and loved ones. That is why The ALS
Association – DC/MD/VA Chapter
has launched its Assistive Technology
Campaign to create two free-standing
Assistive Technology Clinics and an AT
Mobile Unit.
The AT Clinics will provide a place for
people with ALS to visit with an Assistive
Technology Specialist and trial and loan
specialized AT equipment. The AT Clinics
will utilize AT Treatment Kits, consisting of
devices such as Eye Tracking Technology,
Voice Amplifiers, Emergency Call Systems
and more. The clinics will be located in
Rockville, MD and Richmond, VA.
The AT Mobile Clinic will provide much
of the same support through specialists
and treatment kits, but on wheels. The
Mobile Unit will allow our specialists to
reach people who are unable to come
into a clinic, such as those living in the
remote areas of Southwest Virginia.
This is a HUGE step in our Chapter’s
ability to meet the increasing AT needs of
people with ALS. But we can’t do it alone!
It is our sincere hope that you will help
us spread the word about this exciting
endeavor and consider giving a gift in
support of our efforts. To make a gift, you
can use the donation envelope provided
in this newsletter.
We also hope that you will join us for
the grand opening and ribbon cutting
of our first AT Clinic in Richmond, VA
(8100 Three Chopt Road, Suite 147)
on September 24th at 2pm. Enjoy a
meet and greet with our staff, a sneak
peak of our Assistive Technology
Clinic, equipment demonstrations
and more. Please RSVP to Tanyelle
Gill by Wednesday, September 21st at
TGill@ALSinfo.org or 240-238-9057.
TECH TIP TUESDAYS
For people living with ALS, technology is essential. Our care services team provides
high tech assistive technology such as iPads, eye gaze devices and more to assist
members of our community. Although these are useful, they are not the only type of
technology available to people with ALS. Sometimes the best kind of technology can
be made at home. These DIY ideas can help give people with ALS a little bit more
independence every day.
At the beginning of June, our Chapter started Tech Tip Tuesdays on our Facebook
and Twitter accounts. This weekly tip helps provide innovative and cost effective ideas
created by families, friends, caregivers, our Chapter staff and people with ALS. By
providing these tips, we are giving our community the opportunity to learn, interact
and share their own experiences and ideas.
In the past month, our Chapter has collected a multitude of creative tech tips and
we’re always looking for more. If you have a tip you would like to share with us, please
send it to Rachell Westby, Assistive Technology Manager at RWestby@ALSinfo.org.

2. 2
TheALSVOICE•Fall2016
Hello, my name is Lisa Davis. I was
diagnosed in 2008 at Duke ALS clinic
but had symptoms for years before. I
have a rare slow progressing, familial,
bulbar onset form of ALS. I feel this slow
progression has given me more time to
advocate and help spread awareness.
I lost my voice for years before other
outward signs of the disease were
apparent to outsiders. As my voice got
harder to understand, I started using a
Boogie Board, LCD writing and drawing
board, to write what I wanted to say.
This is a great low cost communication
tool for those who can still write and it
was readily accepted by the public who
thought it was neat.
Over the years my motor skills have
waned and I now use an iPad to
communicate as I still have some gross
motor skills. The Chapter loaned me an
iPad with several speaking programs
installed on it and it has helped me a
great deal. The Assistive Technology
Specialist made a house call to bring me
the device and explained how to use the
programs. They also showed me how
to use some accessibility items on the
tablet, making it easier for me to take
screen shots and other things. They also
explained how I can continue to use
the iPad with external switches should/
when that becomes necessary due to
hand and finger weakness. Recently they
loaned me a holder that hooks onto my
wheelchair to hold the iPad so it’s always
where I can reach it easily.
Years ago communication devices were
only for simple communicating, limiting
people with ALS to life cut off from
others. I supported the initiative to rally
for undefined devices that could access
internet, opening up new avenues for
me and others to communicate online
for support and to access lights, tv
and other environmental controls
through apps and switches. So, I am
very excited that the Chapter will be
opening two new Assistive Technology
Clinics, to help people like me not only
to communicate, but to stay connected
and independent.
And today, I’m involved with a lot of
social media sites and in touch with
people from all over the world who
share their experiences, knowledge and
tips for living with this disease. With my
devices and the assistance I’ve gotten
from the Chapter, I’ve been able to
participate in the Chapter’s Tech Tip
Tuesdays on their social media sites.
These tech tips come from people
like myself with ALS, caregivers and
specialists who come together to share
low tech, high tech and DIY tips for
people living with this disease. These
tips have generated a lot of interest
and I am happy that I have been able to
contribute some of the tips that I have
learned over the years.
But what else has the Chapter done
for me? They’ve loaned me all kinds
of equipment over the years, some
of which include ramps, wheelchairs,
beds, chairs and numerous aids to
make life easier and help me remain as
independent as possible. And I can use
the loaners for as long as I need them
at no cost! I just email my Care Service
Coordinator, Emma and ask if the loan
closet has an item and if they do, I have
it in less than a week.
I’ve been fortunate enough to work with
some great people in this Chapter over
the years. They’ve been an invaluable
resource to me and my family. I’m in
touch with many people with ALS who
are not as fortunate as I am to have such
great support.
These are some of the reasons that I
walk. The funds raised through Walk to
Defeat ALS go to support these FREE
services to people like myself and nearly
700 other people with ALS across the
region. These funds allow the Chapter
to continue to provide this support,
while also supporting the research to
find viable treatments and a cure for this
terrible disease.
My team may not be the biggest team
but we’ve got big hearts. Even small
efforts in the fight against ALS can
lead to BIG changes. So, I hope you will
take the first small step and join me as
an advocate in the fight against ALS.
There are so many ways to get involved,
whether you participate in the Walk to
Defeat ALS, volunteer at the Chapter,
or make a donation to the new Assistive
Technology Clinic. I know together we
can make a difference in this fight!
As you can see the disease took my
speaking away, but not my voice.
THIS IS WHY I WALK…AND
YOU SHOULD TOO
By Lisa Davis, Chester, VA
ALS LUNCH & LEARN
Bring The ALS Association-DC/MD/VA Chapter’s Lunch & Learn
Program to your workplace today!
Our Lunch & Learn Program provides you with the opportunity to learn more
about ALS and how YOU can get involved and make a difference! Our Chapter
will come to your workplace, provide an overview of ALS, what the Chapter
does to help those affected by the disease and offer ways that you and your
co-workers can join in the fight.
For more information or to book a Lunch & Learn, please contact
Tanyelle Gill, Senior Marketing & Communications Manager
at TGill@ALSinfo.org or 240-238-9057.

3. 3
ADVOCACY CORNER
Advocacy is a year round effort, with our Chapter continually working to
spread awareness about ALS and the issues that affect people with ALS and
their families. So, we’d like to share with you some of the exciting things we
have achieved in this year’s advocacy efforts, thus far.
Following a meeting of our advocates with Congressman Dutch
Ruppersberger (MD- 2) in May, the Congressman became a co-sponsor of
H.R 5183. This bill, named the ALS Disabilities Insurance Access Act of 2016,
amends the Social Security Act to eliminate the five-month waiting period for
disability insurance benefits for people with ALS. Nice work advocates!
Lastly, we are excited to announce the support of several of our members of
Congress, who will serve as Honorary Chairs of our Walk to Defeat ALS® this
fall. We are extremely thankful for their generous commitment of time and
continued support in the fight against ALS. We’ll see you on walk day!
ALS advocates are on the front lines, leading the fight against ALS. As an
advocate, you can be a voice for the ALS community, helping to change the
laws and policies that affect thousands of people living with this disease. If you
are interested in becoming an ALS advocate, please contact Karen Rarog at
KRarog@ALSinfo.org or 301-978-9855.
Honorary Chair
Congressman Bob Goodlatte
Roanoke Walk to Defeat ALS®
Sunday, September 25, 2016
Honorary Chair
Congressman Dutch Ruppersberger
Baltimore Walk to Defeat ALS®
Saturday, October 1, 2016
Honorary Chair
Congressman Bobby Scott
Richmond Walk to Defeat ALS®
Saturday, October 22, 2016
Honorary Chair
Congresswoman Eleanor Holmes Norton
Washington D.C. Walk to Defeat ALS®
Saturday, October 29, 2016
TheALSVOICE•Fall2016
UPCOMING
BLEND EVENTS
Join us for Blend—an
evening of food,
wine, auction and
fun, as we raise a
glass to defeat ALS!
THURSDAY, NOVEMBER 17, 2016
6:00pm – 10:00pm
Blend: Hampton Roads, VA
The Slover Library
235 E Plume Street, Norfolk, VA 23510
For more information or to purchase
tickets or sponsorships visit
web.alsa.org/blendhamptonroads
THURSDAY, JANUARY 19, 2017
6:00pm – 10:00pm
Blend: Richmond, VA
The Boathouse at Rocketts Landing
4708 Old Main Street
Richmond, VA 23231
For more information or to purchase
tickets or sponsorships visit
web.alsa.org/blendrichmond.
Upcoming Team
Challenge ALS Events
For more information on our
upcoming events, please
visit www.ALSinfo.org
SATURDAY, OCTOBER 8, 2016
Sea Gull Century Bike Ride
in Salisbury, Maryland
To register please visit web.alsa.org/
Seagullcentury
SUNDAY, OCTOBER 30, 2016
Marine Corps Marathon
in Arlington, VA
To register please
visit web.alsa.org/MCM

4. Newsletter of The ALS Association - DC/MD/VA Chapter
THE ALS ASSOCIATION - DC/MD/VA CHAPTER
7507 Standish Place
Rockville, MD 20855
NON-PROFIT ORG.
U.S. POSTAGE PAID
SUBURBAN, MD
PERMIT NO. 1677
Printing by Spectrum Printing & Graphics, Rockville, MD
VOICET H E
OUR OFFICES
Administrative Office:
7507 Standish Place
Rockville, MD 20855
Phone: 301-978-9855
1-866-348-3257
Fax: 301-978-9854
Regional Office:
8100 Three Chopt Road, Suite 147,
Richmond, VA 23229
Phone: 804-836-1750
Fax: 804-836-1751
FOLLOW US ON:
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OUR MISSION
Leading the fight to treat and
cure ALS through global research
and nationwide advocacy
while also empowering people
with Lou Gehrig’s Disease
and their families to live fuller
lives by providing them with
compassionate care and support.
@ALSofDCMDVA
Fall 2016
The ALS Association
Walk to
Defeat ALS
because you can
WalkDates
09.25.2016 Sunday
Roanoke Walk to Defeat ALS
Hollins University
10.01.2016 Saturday
Baltimore Walk to Defeat ALS
Canton Waterfront Park
10.22.2016 Saturday
Richmond Walk to Defeat ALS
Brown’s Island
10.29.2016 Saturday
Washington D.C. Walk to Defeat ALS
Washington Monument Grounds
Register early for the ALS
Association’s largest fundraiser and
make a difference against ALS!