Colin's DKMS Bone Marrow Presentation

1. Saving Lives
A DKMS Guide to Bone Marrow
Donation

2. Who is DKMS?
DKMS is the world’s largest bone marrow donor
center with over 3 million registered donors and
over 30,000 transplants.
Peter Harf, who lost his wife to blood cancer,
founded the organization as a non-profit in
Germany in 1991, together with Prof. Dr. Gerhard
Ehninger M.D. Peter´s daughter, Katharina Harf,
now leads DKMS in the U.S.

3. WHY WORK WITH DKMS?
We Can Help! Our years of experience organizing
donor drives combined with the enthusiastic
involvement by a patient’s family and friends are
powerful factors in the success of patient drives.
• DKMS can help you organize a drive anywhere in the
U.S.
• DKMS uses high resolution typing minimizing search
time for patients.
• DKMS does not require new donors to pay the $65
registration fee.
• https://www.facebook.com/DKMSAmericas

4. DKMS
DKMS Americas has registered over
280,000 donors in the U.S., which
allowed more than 650 patients to
receive a lifesaving transplant.
Today, DKMS is the world’s largest
and fastest growing bone marrow
donor center with over 3 million
registered donors.

5. What is marrow or bone-marrow?
Bone-marrow is the soft, sponge-like material
found inside bones. It contains immature cells
called stem cells.
Bone-marrow transplantation (BMT) and
peripheral blood stem cell transplantation
(PBSCT) are procedures that restore stem cells
that have been destroyed by high doses of
chemotherapy and/or radiation therapy.

6. Who can become a bone marrow
donor?
In principle, any generally healthy person between
the ages of 18 and 55, who weighs at least 110
pounds and does not exceed a maximum body mass
index (BMI) of 40, can register as a donor.
Certain health prerequisites must be met. These
restrictions are intended to protect the well-being of
both the donor and the patient.
Donors are asked to share personal information such
as age, address and telephone number. This
information is private but is included in the DKMS
database.

7. What are stem cells?
Stem cells have the remarkable ability to develop
into many different cell types in the body. Stem
cells of the blood (hematopoietic stem cells)
generate all other blood cells in the human body,
including red blood cells, platelets, and white
blood cells.
Most stem cells are found in the bone marrow,
but some stem cells called peripheral blood stem
cells (PBSCs) can be found in the bloodstream.
Umbilical cord blood also contains stem cells.

8. What if I am a match? PART a.
A. Peripheral Blood Stem Cell Donation (PBSC):
In this method, cells are collected via the
bloodstream. To increase the number of
stem cells in the bloodstream, donors receive
daily injections of a synthetic protein called
filgrastim for 4 days before and on the day of
the collection.
On the day of collection the donor's blood is
removed with a sterile needle from one arm
and passed through a machine that
separates out the blood stem cells. The
remaining blood is returned to the donor
through the other arm. The cell collection is
an outpatient procedure that takes about 4-6
hours on 1-2 consecutive days.
Possible side effects and recovery: While
taking the medication, many donors
experience flu-like symptoms such as
headaches, bone and muscle achiness and
fatigue. Most side effects should subside
within 48 hours of donating.

9. What if I am a match? PART b.
B. Bone Marrow Donation:
• B. Bone Marrow Donation:
Marrow cells are collected from the
backside of the pelvic bone (not the
spine) using a special syringe. Donors
receive general anesthesia so no pain is
experienced during the marrow
extraction. This is a 1-2 hour, outpatient,
surgical procedure.
Possible side effects and recovery: Many
donors experience some pain, bruising
and stiffness for up to two weeks after
their donation. Within a week of
donating, most donors are able to return
to work, school and many regular
activities. The donor’s marrow is
completely replenished within a few
weeks.

10. How to Donate Bone Marrow

11. Expecting Mothers and the Cord
Blood Bank of Arkansas
Cord blood is the blood that remains in the umbilical cord and placenta and are collected only
after the birth of a healthy baby.
Cord blood cells are a source of treatment for patients with cancers such as leukemia and
lymphoma who lack a bone marrow donor. Cord blood also has tremendous promise for
regenerating diseased or injured organs, including heart muscle, bone and spinal cord
tissue.
• Donating is completely painless and simple. Before giving birth, request an easy-
to-follow kit from the Cord Blood Bank of Arkansas to give to your doctor at the
time of birth. From there the donated cells will be delivered to UAMS for storage.
• Deciding whether to donate cord blood for public use or store it for private use is
a personal decision. Your options for using cord blood include:
• Storing your baby's cord blood in a public bank for public use to be transplanted
into any patient that is considered a match. There is no cost to you because
public cord blood banks cover the cost of processing, testing and storing donated
cord blood.
• Storing your baby’s cord blood in a private bank, which allows you to store the
cord blood for your own family. You are charged a fee for the initial collection
plus an annual storage fee.
• At UAMS, we have one of the largest adult blood cell transplant centers in the
country. The Cord Blood Bank of Arkansas will link with national and
international networks of cord blood banks that supply these life-saving cells for
transplant and research all over the world.
http://www.uamshealth.com/cordblood

12. Types of of Leukemia
Acute Lymphoblastic Leukemia (ALL) is the most common type of
leukemia in young children. It is more common in adults than in
children, and more commonly in men than women.
Acute Myelogenous Leukemia (AML) is the most common type of acute
leukemia. More than 11,900 new cases occur in the United States each
year, mostly in older adults.
Chronic Myelogenous Leukemia (CML) occurs mainly in adults. A very
small number of children also develop this disease.
Chronic lymphocytic leukemia (CLL) causes a slow increase in white
blood cells called B lymphocytes, or B cells.
Hairy Cell Leukemia (HCL) About 80% of affected people are adult men.
T-cell Prolymphocytic Leukemia (T-PLL) is a very rare and aggressive
leukemia affecting adults; somewhat more men than women are
diagnosed with this disease.
Large Granular Lymphocytic Leukemia it is a rare and indolent (not
aggressive) leukemia.[13]
Adult T-cell Leukemia is caused by human T-lymphotropic virus (HTLV),
a virus similar to HIV.

13. MYTH
Donors have to pay for the registration and the donation
procedure.
FACT
There is no cost to the donor to donate. When a donor is
matched with a patient, the patient's insurance, the National
Marrow Donor Program which operates the Be The Match
Registry or DKMS will pay the costs (including any travel,
meals, lodging expenses that may be necessary). A donor’s
insurance, will never be used. The best gift you could give is
donating, so we don't ask you to pay.
Although a donor never pays to donate, many people do
contribute toward the donor registration fee when they sign-
up as a bone marrow donor.

14. MYTH
Bone marrow donation involves a lengthy recovery process.
FACT
PBSC donors take the drug filgrastim for five days leading up to
donation and may have symptoms such as headache, bone or
muscle pain, nausea, insomnia or fatigue during this time.
These symptoms nearly always disappear one or two days
after donating, and the donor is back to normal.
Marrow donors can expect to feel fatigue, some soreness or
pressure in their lower back and perhaps some discomfort
walking. Marrow donors can expect to be back to work, school
and other activities within one to seven days. The average
time for all symptoms to disappear is 21 days.

15. Myth
Donating bone marrow is dangerous and
weakens the donor.
FACT
Though no medical procedure is without risk,
there are rarely any long-term effects from
donating. Only five percent or less of a donor's
marrow is needed to save a life. After
donation, the body replaces the donated
marrow within four to six weeks.
DKMS educates donors, answer questions
every step of the way, and follows up with
donors after donation.

16. MYTH
Pieces of the bone are removed from the
donor.
FACT
Pieces of bone are not removed from the
donor. In marrow donation, only the liquid
marrow found inside the bones is collected. In
a PBSC donation, cells are collected from the
bloodstream in a process similar to donating
plasma.

17. MYTH
Bone marrow stem cells are taken from the
spinal cord.
FACT
In a bone marrow donation, stem cells are
collected from the back of the pelvic bone
(not the spinal cord) using a needle while the
donor is under anesthesia. In a peripheral
blood stem cell donation, the stem cells are
collected directly from the bloodstream.

18. MYTH
All bone marrow donations involve surgery.
FACT
There are two ways to donate. The majority of
donations do not involve surgery. The
patient's doctor most commonly requests a
peripheral blood stem cell (PBSC) donation,
which is non-surgical and outpatient. If the
patient's doctor requests marrow, marrow
donation is a surgical procedure, usually
outpatient.

19. MYTH
Bone marrow donation is painful.
FACT
General or regional anesthesia is always
used for this procedure. Donors feel no
needle injections and no pain during the
marrow donation process. Afterwards,
most donors feel some pain in the lower
back for a few days or longer.

20. Bone Marrow Statistics
To find a marrow match for anyone is
hard.
Even within one's own family, the
chances of finding one are only about
30%.

21. Bone Marrow Statistics
What are the actual chances of finding a
suitable marrow or stem cell donor?
The odds are 1 in 20,000 in identifying
an unrelated compatible marrow
donor. YOU could be that special life-
giving person!

22. Bone Marrow Statistics
Leukemia (a blood cancer) will
strike 44,000 Americans this year,
including 3,500 children. It will
kill about half of the adults and
about 700 of the children. Blood
stem cell, cord blood or bone
marrow transplant may offer the
only chance for a cure.

23. Bone Marrow Statistics
At least 1,000 people
die each year because
they cannot find a
matching donor.

24. Bone Marrow Statistics
A significant number of those on the
national bone marrow registry cannot
be located or will not donate when
asked to do so. The percentages of
donors who are available and willing
are: 65 for Caucasians; 47 percent for
Hispanics; 44 percent for Asians; 34
percent for African-Americans.

25. Bone Marrow Statistics
Only 2 percent of the population
is on the national registry.

26. Bone Marrow Statistics
Donating bone marrow is
safe: More than 35,000 people
have donated bone marrow to a
stranger without a single donor
death.

27. Bone Marrow Statistics
Blood cancer is the second leading
cause of all
cancer deaths in the U.S. and kills
more children
than any other disease.

28. Bone Marrow Statistics
Every 4 minutes someone is
diagnosed with blood cancer and
every 10 minutes, blood cancer
takes
a precious life.

29. Bone Marrow Statistics
Only 30% of patients find a match
within their family. The other 70%
of patients rely on a perfect
stranger to give them a second
chance at life.

30. Bone Marrow Statistics
6 out of 10 patients never receive
the lifesaving
transplant they need.

31. IT’S EASIER TO FIND A
SOUL MATE THAN A
DONOR MATCH!
Patients are most likely to match a
donor with a similar ethnic
background. Patients with more
diverse ethnic backgrounds (including
African-Americans, Latinos, Asians)
tend to have more diverse HLA types,
making it even more difficult to find a
match.
There are more than 4,000 known
HLA characteristics that can occur in
millions of combinations. The
donor and patient must have at least
8 tissue (HLA) characteristics in
common to be considered a match
but ideally should have 10.
Having more donors and more ethnic
diversity on the registry increases the
chance of finding matches
for all patients.

32. Arkansas Statistics
So far we have registered over 4000 donors !

33. Cancer Warriors
Anastacia Santa Cruz– Little Rock, AR is 15 and
was diagnosed with AML Leukemia January 28,
2012. She has been through one round of
chemo.

34. Cancer Warriors
Shirley Hurt – Jonesboro, AR is 68 and has
AML Leukemia. Her sister is the match
and she is due for a transplant in April of
2012.

35. Cancer
Warriors
Leslie – Little Rock,
AR- is 29 and was
diagnosed with
AML Leukemia just
hours before
giving birth to
Ayden. She has
had 3 rounds of
chemo. The baby
is healthy, but
Leslie still needs a
donor.

36. Cancer
Warriors
Seun Adebiyi is a 26 year
old Yale Law School
graduate who is also
training for the 2014
Winter Olympics. In June
2009, he was diagnosed
with lymphoma and
leukemia and is now in
remission.
Seun co-founded the Bone
Marrow Registry in
Nigeria.

37. Cancer Warriors
Mike Smyers was 66.
He had AML Leukemia.
Three matches were
found in a registry
with 14 genetic
markers. One was
selected to do the
transplant. His body
ultimately rejected the
new bone marrow
which is sadly more
common with people
his age and older.

38. Cancer
Warriors
Colin Flood, a 6-
year-old boy from
Middle Village, NY,
was diagnosed
acute lymphocytic
leukemia in
December 2011.
Colin needs a
match.

39. Cancer
Warriors
Shannon Tavarez- New York
The 11-year-old who starred
on Broadway in "The Lion
King" passed away before a
match could be found. She
had AML Leukemia.
83 percent of African-
American patients who need
marrow transplants don't
find matches

40. Cancer Warriors
Terria is currently in the fight against Juvenile
Myelomonocytic Leukemia (JMML) –DONORS
ARE NEEDED

41. Cancer Warriors
Tony Bliss Little Rock, AR is 45 and
has CLL. Doctors have told him he
needs a transplant asap.

49. Be a Hero. Get Swabbed!

50. DKMS donor, Caitlin, meets Jaz,
the girl she saved.

51. EVANDER HOLYFIELD JR. DONATES
BONE MARROW

52. DKMS Donor Aaron with Joshua,
the boy he saved

53. CELEBRITIES HELP SPREAD THE
WORD
50 Cent
“My son is just a couple years older than Shannon and I can’t imagine if his life was needlessly cut short when there is
someone out there that could save him. A complete stranger is the only person who can give Shannon a fighting
chance to live. Register with DKMS online at www.GetSwabbed.org.”
In 2010, 50 Cent speaking about leukemia patient Shannon Tavarez.
Cindy Crawford
“This is a cause that is very close to my heart and I hope we are able to raise awareness and funds for DKMS.”
In 2008, Cindy Crawford was honored with the Mechtild Harf Award at the 2nd Annual DKMS Linked Against
Leukemia Gala.
Jennifer Lopez
“These things just make you realize we are all interconnected and depend on one another.”
Jennifer Lopez spearheaded a bone marrow donor drive and rallied the Hispanic community to help a fellow Latina.
Jon Stewart
On speaking about registering as a bone marrow donor.
“It’s a cheek swab. It’s an outpatient procedure. In New York City, it may be the most convenient thing you can do.
So, I’m just hoping everybody comes out and takes care of it.”
Paul Pierce
On speaking about leukemia patients.
“As a father myself, it is awful to see patients fight such a challenging disease like leukemia. I encourage the African-
American community to join DKMS in the fight against leukemia.”
Rihanna
“Leukemia is the most common disease children in the U.S. die of and we need to change that. I urge everyone to
sign up as a bone marrow donor with DKMS. If we have more donors, we can save more children.”
DKMS along with Lisa Flynn’s family and Rihanna recruited more than 5,000 marrow donors, to help find a match for
Lisa.

54. Commonly Asked Questions from
Previous Drives
Q: How long will it take to find a match?
A: It depends, thousands go into the bank every day and typed against donors every day.
Q: How long does it take to get a donor card?
A: They usually are sent out once a year, but they are placed on the registry immediately.
Q: How do I host my own drive?
A: It’s Easy! Just contact DKMS and they will be happy to help you.
Q: Is the process painful?
A: The extraction process will cause soreness for a few days, but most people are at work the
next day. The procedure is outpatient. There is no drilling into your spine!
Q: Does DKMS provide transportation for the donor as well?
A: Yes, we provide everything, even missed wages at work up to a certain fee. DKMS calls the
donor to check in even two years later. DKMS also carefully monitors the whole process. If
the donor has to go out of town for the collection, DKMS pays for flights, hotels and even
for a friend to go with.

55. Become a Swab Warrior!

56. Become a SWAB WARRIOR!
Start your own drive!
It’s easy, free, and painless
go to
GETSWABBED.ORG
DKMS Americas | 33 East 33rd Street, Suite 501 | New
York, NY 10016
p: 866.340.DKMS (3567) | f: 212.209.6710 | e:
info@dkmsamericas.org |w: www.getswabbed.org

57. The End