On Sunday April 26, 2009 from 10 am to 5 pm we conducted
a Bone Marrow Donor Recruitment Drive in
Toronto at the Adath Israel Synagogue, 37
Southbourne Ave. near Wilson Ave. and Bathurst St. This
drive was organized through the Gift
of Life Bone Marrow Foundation, an internationally recognized
organization facilitating bone marrow, blood stem cell, and
cord blood transplants for children and adults suffering from
life-threatening illnesses.
The registration process was fast and easy, and we only required
four swabs from inside your cheeks (no blood was drawn at
this time). The donor was then entered into the registry.
New! Updated April 27th, 2009: 1,457
people had their cheeks swabbed and will be
added to the bone marrow registry. This is a spectacular
turnout. Even more came out to support Jonathan and his
family - thank you to everyone!
I couldn't attend the April 26th Bone Marrow
Drive, but I would still like to be tested
If were are unable to attend the drive, but would be interested
in registering to be on the donor list, you can still be tested:
CANADIAN DONORS
can get a FREE cheek swab test kit sent to them by mail by
filing out the online form at www.onematch.ca
USA DONORS
can get a cheek swab kit sent to them by mail for a $54 tax-deductible
contribution to cover laboratory testing costs. Use the online
form located at www.giftoflife.com
INTERNATIONAL DONORS: In
any country you can go to your local registry and your information
will be made available in the international database. All
the donor databases are linked, and whether you live in
Australia or right here in Toronto, if you are a match for
someone, you could be their donor.
What does the initial test involve?
The registration process is fast and easy, and we only require
four swabs from inside your cheeks (no blood will be drawn
at this time). The donor is then entered into the registry.
Does getting tested cost me anything?
No. It is free and you won't be charged for any part of the
testing or donation process.
Who is eligible to be tested as a potential
donor?
Any man or woman in good health and between the ages of 18
and 60, can become a donor.
Does my ethnic background mean that I can't
donate?
No, anyone can donate if they are in good health.
I already registered for a bone marrow
test a few years back. Do I have to register again?
New Answer!
If you have already been tested you do not have to register
or be tested again.
If you were tested at a drive sponsored by the Gift
of Life Bone Marrow Foundation, (formerly the Friends
of Jay Feinberg), you can check if you are in the registry
by calling Toll Free: +1-800-9MARROW.
As a rule of thumb, if you were tested between 1991 - 1995
in the United States, your record is in the National Marrow
Donor Program. Donors tested at drives facilitated by Gift
of Life recruitment groups since 1995 are in the Gift of Life
Bone Marrow Registry.
I did my test kit some years ago and never
heard anything back. If I was a match would they let me know?
Or how does that work?
When you submit a cheek swab sample for HLA testing, your
name will be added to the database. In the event that your
name comes up as a likely match for a patient, you will be
contacted to confirm your interest and the next steps.
Even with millions of donors on registries worldwide, a perfect
stem cell match isn't always available. Some patients have
uncommon antigens that may be very difficult to match. In
these instances, even with everyone's best efforts, it may
be impossible to find a donor.
It may be years before you are called to donate. In fact,
you may never be called.
It is for this reason that OneMatch.ca
is committed to building the diversity of the database by
increasing the number of potential donors who possess unusual
antigens.
OneMatch.ca Stem Cell
and Marrow Network is a Canadian organization managed by Canadian
Blood Services*. OneMatch.ca
is responsible for finding and matching volunteer donors for
patients who require stem cell transplants. Fewer than 30
per cent of patients who need stem cell transplants find a
compatible donor within their own families. The rest rely
on those who have volunteered to donate stem cells to anyone
in need.
*Canadian Blood Services is a not-for-profit, charitable
organization whose sole mission is to manage the blood and
blood products supply for Canadians. You can read more on
their website.
Gift of Life Bone Marrow Foundation: giftoflife.org
is a U.S. based internationally recognized organization facilitating
bone marrow, blood stem cell, and cord blood transplants for
children and adults suffering from life-threatening illnesses.
Through targeted recruitment efforts focusing on Jewish communities
throughout North America, Gift of Life has greatly improved
the chances that Jewish patients needing transplants will
find genetically matched donors.
Jonathan Grossman was Canadian, so why
use the U.S. based "Gift of Life?"
The Gift of Life Bone Marrow Foundation: giftoflife.org,
are able to supply the cheek swab test kits for bone marrow
drives, whereas the Canadian OneMatch.ca,
does not supply kits for events, and instead requires that
all test kits be mailed. So in order to have a bone marrow
drive, the Grossman family have to purchase cheek swab test
kits to be used at that event (Canadian health insurance does
not apply to American health products).
I want to join OneMatch.ca
and be tested. What are the next steps?
Complete the OneMatch Knowledge Test and forms at OneMatch.ca
You will receive an email telling you that OneMatch has
received your information.
OneMatch will then contact you by phone within 8-10 working
days to discuss your eligibility to receive a buccal swab
kit and proceed with your enrolment.
If you prefer to talk to OneMatch over over the phone, you can call OneMatch.ca toll-free at:
1-888-236-6283. They will
walk you through the knowledge test over the phone and subsequently
can mail you a testing kit.
What do you mean by a "Match"?
Donors and patients are matched according to the compatibility
of inherited genetic markers called Human Leukocyte Antigens
(HLA). These antigens are inherited from your parents. Up
to 12 antigens are considered important in the matching process.
What is Myelofibrosis?
Primary Myelofibrosis with Myeloid Metaplasia (MMF) is a chronic malignant hematological disorder characterized by an enlarged spleen, varying degrees of anemia and low platelet counts, red cells in the peripheral blood that resemble tear drops, the appearance of small numbers of immature nucleated red cells and white cells in the blood, varying degrees of fibrosis of the marrow cavity (myelofibrosis) and the presence of marrow cells outside the marrow cavity (extramedulary hematopoieses or myeloid metaplasia). MMF and marrow fibrosis are thought to be a response to a malignant proliferation of hematopoietic stem cells. The syndrome ultimately leads to marrow failure characterized by severe anemia and frequently low platelet counts.
Optimal care for primary myelofibrosis is at present supportive and palliative but new strategies including stem cell transplantation show promise.
Symptoms of Primary Myelofibrosis: Nonspecific symptoms of primary myelofibrosis include fatigue, weight loss and night sweats. Symptoms due to an enlarging spleen are also common as the primary myelofibrosis progresses.
I'd like to donate
some money to offset some of your costs for testing
The cost of the Gift of Life testing kits is in the tens
of thousands of dollars (US$54 per kit or CDN$67) and the
Grossman family are gratefully accepting donations to offset
some of their costs for these kits and cash/cheque donations
on the day of the drive. Please see the donate
page for more information.
I'd like to get a kit through OneMatch.ca, but I'm not comfortable giving out my address or personal information to anyone on the internet.
The OneMatch Knowledge Test form on OneMatch.ca is protected by highly secure encrypted High Grade Encryption (RCA 128 bit)
via Entrust
and Canadian Blood Services. When you go to the OneMatch.ca
Knowledge Test, look for the padlock icon and " https"
prefix in the address bar of your browser before submitting
personal information online. If you see the padlock icon and
" https", then your information is being transmitted
securely.
However, if you don't want to submit the OneMatch.ca knowledge test
over the internet, that's not a problem either. Just read about the process
on OneMatch.ca
and then call OneMatch.ca toll-free at 1-888-236-6283. They will
walk you through the knowledge test over the phone and subsequently
can mail you a testing kit.
Does OneMatch.ca
accept Donations on Jonathan's behalf?
OneMatch being the Canadian registry, and a part of Canadian
Blood Services, provides an essential service for Canadians
and does indeed accept donations. However, these donations
are not allocated to a specific person or bone marrow drive,
such as the event for Jonathan.
At this time, only donations to the giftoflife.org,
can be applied towards the cost of the bone marrow drive because
giftoflife
is the sole provider of the kits and organizational tools.
Please see the donate page for more
information.
If you live in Canada, OneMatch will send you a free test
kit in the mail if you register online at OneMatch.ca.
This is no charge to you or the Grossman family as it is covered
under Canadian Health Insurance.
What if I'm a match?
Being a match is an exciting experience. But it is still
only a first step. Your blood needs to undergo additional
testing to determine the full extent of your compatibility.
In the event that your name comes up as a likely match for
a patient, you will be contacted to confirm your interest
and the next steps. You can find more information at OneMatch.ca.
I don't live In Canada or the U.S., can
I still be tested?
Yes you can! In any country you can go to your local registry
and your information will be made available in the international
database. All the donor databases are linked, and whether
you live in Australia or right here in Toronto, if you are
a match for someone, you could be their donor.
What if my bone marrow is not a match?
Even if you do not have the opportunity to donate stem cells
to someone in need, it doesn't diminish the value of your
contribution in any way. By being tested, your information
goes into a database where it may be able to save someone
else's life; you've made an extraordinarily generous commitment,
one that gives many patients a better chance at survival and
more hope for the future.
