2. Who is DeleteBloodCancer
(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. DeleteBloodCancer (DKMS)
Deletebloodcancer has registered over
280,000 donors in the U.S., which
allowed more than 650 patients to
receive a lifesaving transplant.
Today, they are the world’s largest and
fastest growing bone marrow donor
center with over 3 million registered
donors.
4. 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.
5. 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.
7. On September 2011 she was diagnosed 5 hours before
delivery of healthy baby Ayden with AML Leukemia.
She felt ill for many months and was told by various
doctors it was either mono or pregnancy complications.
Doctors gave her 6 months to a year to live without a
bone marrow transplant.
The baby and Leslie almost did not make it through the
C-section birth.
Arkansas Dem-Gazette
Sync Magazine
8. The Drives
• Over 7000 swabbed in
Arkansas (not counting
kits ordered online)
Hendrix College Riverfest
9. The Drives
• 87 Official Matches
Found
NEA Clinic -
Jonesboro
Pulaski Heights United
Methodist Church
10. The Drives
• 5 Official Stem Cell
Collections!
Arkansas State
University
Central High School
13. What can you do?
• First you must meet
certain requirements:
You are eligible to
register if you are:
between the ages of
18 and 55
in general good health
at least 4’10” and 110
lbs
Information can be found on deletebloodcancer.org
(medical guide provided at each drive)
14. Donor Eligibility
You are not eligible if you have:
• HIV
• Hepatitis B or C
• Kidney or liver disease
• Chronic or severe neck or back problems
• Epileptic or other seizure within past year
• Diabetes that requires medication
• Sleep apnea, breathing problems or severe asthma (daily inhalers are acceptable)
• Autoimmune disorders such as lupus, rheumatoid arthritis, multiple sclerosis or
fibromyalgia
Or a history of:
• heart disease/surgery
• strokes, including TIA
• blood clotting or bleeding disorders
• cancer, with the exclusion of melanoma, breast, bladder, cervical (stage O, in situ)
and cured localized skin cancers such as basal cell or squamous cell
If you are ineligible to register, there are plenty of other ways to help us save lives:
Host a donor drive --- Raise Money --- Spread the word
15. Who can become a bone marrow
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 international
database.
16. Swabbing Procedure
• Review Requirements
• Fill out the form
• Wash mouth out with water
• The swabbing procedure consists of 2 swabs.
Swab each inside cheek for 15 seconds in a
circular motion.
• Place swabs in envelope.
• You are now on the international registry until
you are 61!
17. 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 Deletebloodcancer 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.
19. What if I am a match? PART a.
A. Peripheral Blood Stem Cell Donation (PBSC):
(70% of the time)
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.
20. What if I am a match? PART b.
B. Bone Marrow Donation:
• B. Bone Marrow Donation: (30%)
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.
21. 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 DeleteBloodcancer 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.
22. 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.
23. 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.
24. 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.
25. 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.
26. 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.
27. 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.
28. 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%.
29. 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!
30. 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.
31. Bone Marrow Statistics
At least 1,000 people
die each year because
they cannot find a
matching donor.
32. Bone Marrow Statistics
Only 2 percent of the population
is on the national registry.
http://www.ij.org/bone-
marrow-statistics
33. 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.
34. Bone Marrow Statistics
Blood cancers are the second leading
cause of death of children exceeded
only by accidents.
35. Bone Marrow Statistics
Every 4 minutes someone is
diagnosed with blood cancer and
every 10 minutes, blood cancer
takes
a precious life.
36. 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.
38. 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.
39. 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.
40. 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.cordbloodbankarkansas.org/
41. Some of the Heroes along the way
Emily Ingram
“There are too many young women
being diagnosed with blood cancers. I
was one of them. I was diagnosed on
Mother’s Day while 20 weeks pregnant
with my son. After other treatments
failed, a stem cell transplant saved my
life. Donating stem cells is a SIMPLE
procedure and one of the easiest ways
you can save a life. Please get swabbed
today to find out if you are a match for
someone like me, a mom desperately
wanting to know if she can plan a future
with her children. If you are
pregnant, or plan on having kids one
day, please learn about donating your
cord blood through the Cord Blood Bank
of Arkansas and give the gift of
life, twice!”
Emily Ingram, Age 34
Survivor, Hodgkin’s Lymphoma
42. Leslie Harris
She was 29 when
diagnosed with
AML Leukemia just
hours before
giving birth to
Ayden. She has
had 3 rounds of
chemo. The baby
is healthy and
Leslie is currently
in remission.
44. Diane Johnson
I met her at Central High School Drive.
Son Joe Johnson plays in the NBA for
the Brooklyn Nets. He has hosted
many drives.
She was told she needed a bone
marrow transplant.
Currently in remission for Multiple
Myeloma
45. Elizabeth Fortune
Elizabeth Fortune was first diagnosed
with blood cancer in May 2011 and is
currently undergoing treatment for
her third diagnosis of cancer.
"I had found kind of a lump on the
right side of my neck and thought that
sometime was not right," says
Fortune. "Went to the doctor and
after some testing and surgeries they
found the cancer. I did some chemo
and radiation and then I had a second
diagnosis in the Spring on the other
side of my neck and they did some
radiation and then in July they found
the same cancer but it was in lung and
so I'm currently undergoing treatment
for my third diagnosis in about a year
and a half."
46. Donor
Adam O’Dell – Official Bone Marrow Donor
“I signed up with DKMS after seeing Leslie’s story on
KATV in February 2012. After several months I was
contacted about being a possible match. Additional
blood testing showed the match was close enough
to move forward with the donation process. I was
informed that “my match” had been diagnosed with
Leukemia and a stem cell transplant was his best
option. The peripheral blood stem cell procedure
does not involve surgery. I received Neupogen
(filgrastim) injections for the 5 days leading up to
the donation. The injections help my body produce
additional stem cells and caused some minor
discomfort but nothing that required pain
medication or time off from work. DKMS
(deletebloodcancer.org) paid for me and my wife to
fly to and from the hospital where the donation was
performed. I did not have to spend any money or
miss any work outside of the actual day of the
donation. The procedure consisted of each arm
being hooked up to an apheresis machine for 5
hours but any discomfort was minimal and the
nurses were very helpful.”
47. Fighting Red 5K: A Race to End Blood Cancer
Educate, Swab, and Run! October 5th 8:00
am at the Big Dam Bridge in Little Rock
48. Fighting Red 5K: A Race to End Blood
Cancer
• Our mission is to educate, swab, and run for Blood Cancer
Awareness!
• Those who do not wish to run can still participate and donate.
Walkers welcome!
• Balloon release for cancer survivors and in memoriam to those who
were lost.
• Officially certified and timed race!
• Prizes Available!
• “Lifesaver” Award will be given to the top age groups.
• Male and Female, first three finishers in the following age groups:
0-9, 10-14, 15-19, 20-29, 30-39, 40-49, 50-59, 60-69, 70+
• Medals for participants as well as long sleeve tech shirts.
• Register TODAY at FIGHTINGRED5K.COM
50. Become a SWAB WARRIOR!
Start your own drive!
It’s easy, free, and painless
go to
Deletbloodcancer.org
Delete Blood Cancer DKMS
33 East 33rd Street, Suite 501
New York, NY 10016
Email: info@dkmsamericas.org
Phone: 212.209.6700
Fax: 212.209.6710
51. Leslie is currently in remission and still
swabbing just in case and for others in
need.