Candace Weimer

April8th

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April 4, 2012

Social
media fuels desperate search for life-saving stem cell donors

Through creative uses of social media, the number of
Canadians who have signed up with the stem-cell and bone-marrow registry
OneMatch

By ANDRÉ PICARD,
Public Health Reporter
The Globe and Mail

David Geneen suffers
from a rare blood disorder that, without treatment, will result in deadly
leukemia.

So he decided to
throw a party. “It was a festive and warm affair, a great success,” said Mr.
Geneen, a retired luxury-car dealer.

But it was no
ordinary party.

More than 700
friends and strangers recently showed up at Holy Blossom Temple in downtown
Toronto on a Sunday afternoon, and almost everyone aged 17 to 50 – a total of
428 people – underwent a CSI-like swab.

That’s because Mr.
Geneen, 64, has exhausted drug treatments and now needs a transplant of stem
cells – which are be harvested from blood or bone marrow, and have to be a
perfect match. The partygoers who underwent a cheek swab were, in fact, joining
OneMatch, a registry for unrelated stem-cell and bone-marrow
donors.

Social-media
explosion

There are now almost
320,000 Canadians who have signed up with OneMatch. The number has exploded in
recent years, thanks to community-based activities and the ability to order swab
kits online, both driven by creative use of social media. While the stem-cell
and marrow registry has been around since 1988, it was rebranded OneMatch in
2007 and only started actively soliciting donations in the last couple of years,
after pressure from families.

The Facebook page
David Geneen Bone Marrow Drive, caught the eye of Daniel Zuckerman so the
17-year-old offered up his band to provide entertainment at the party. Then, he
and the other members of Truthful Lies got swabbed, a quick and painless swipe
with a Q-Tip along the inside of the cheek.

“I never heard about
this kind of donation before but it’s a cool concept,” he said. His data will
now go into a OneMatch registry and be part of a network of databanks that
include 18 million people in 44 countries
worldwide.

Massive numbers like
that are required because stem-cell matches are determined according to DNA
markers on white blood cells called human leucocyte antigens. There are 10 HLAs
and, ideally, all 10 should match for the donor and recipient to minimize the
risk of a transplant being rejected.

“It’s like trying to
find someone with the same fingerprint as you,” said John Bromley, national
public-affairs manager at OneMatch. “It’s the proverbial search for a needle in
a haystack.”

At any given time,
about 900 Canadians are awaiting a stem-cell transplant. Only about one-third of
them will manage to find a match.

Baby
Reese

One child who defied
the odds is 22-month-old Reese Hawkins, who suffers from a form of leukemia. The
family of the Pictou, N.S., girl learned just last month that OneMatch had
located a donor. In fact, they found three potential donors – two live donors
abroad, and one donor to a cord blood bank.

Reese is now at the
Hospital for Sick Children in Toronto, where chemotherapy began yesterday, and a
stem-cell transplant is scheduled for April 12. She then must remain as an
outpatient for 100 days – likely in Halifax – to deal with complications and
ensure the stem cells are engrafted.

Kora Hanrahan,
Reese’s mother, said they are overwhelmed but overjoyed at the prospect of a
life-saving transplant.

“All I know is that
a mom made a decision to donate her baby girl’s umbilical cord and that’s going
to save my girl’s life,” Ms. Hanrahan said.

“Reese’s donor will
never ever get to know what they’ve done for us but we owe that person
everything.”

Multicultural
drive

If the odds weren’t
astronomical enough already, matches rarely occur outside racial groups because
each ethnicity has inherited haplotypes, a combination of DNA and location on
chromosomes. In the United States, the odds are 1 in 20,000 to 1 in 100,000 for
a match from a stranger and significantly higher for ethnic minorities.
Practically, in a multicultural country like Canada, that means the need to
build a stem-cell bank collected from members of numerous ethnic
groups.

“Our main thrust is
diversity,” Mr. Bromley said, noting that currently, 76 per cent of the
registrants in the database are Caucasian.

But other
initiatives like South Asians for Life and the Other Half Chinese Stem Cell
Initiative have sprung up and recruited potential donors on a large
scale.

The latter conducted
drives last Saturday in Vancouver, Calgary, Toronto and Montreal and netted
4,616 new potential donors. Susan Go, co-founder of the Other Half, noted that
of the 966 Canadians waiting for stem-cell transplants, 32 are of Chinese
background.

When someone needs
stem cells, their first best hope for a match is immediate family members.
Still, fewer than 25 per cent find a match.

A
success story

Candace Weimer, 38,
of Green Lake, B.C., was a lucky one – if you dare describe her ordeal as lucky.
In the spring of 2005, the super-fit personal trainer was feeling increasingly
rundown and frustrated by the changes in her body. “I looked like a chicken
hawk: I had skinny legs and a big abdomen,” she said with a
laugh.

Tests revealed that
she had myelofibrosis, a disorder where the body slowly destroys its bone
marrow.

Her brother was a
match so he became the donor. The process was easy: He underwent apheresis, a
process that is similar to giving blood, except that blood is drawn, the
stem-cell-rich platelets are extracted and the red and white cells are returned
to the body. “It wasn’t a big deal. He sat in a chair for two hours, they drew
some blood and he saved my life,” Ms. Weimer said.

Receiving a
stem-cell transplant, however, is a much more taxing ordeal. First, it is
necessary to shut down the body’s immune system so the body will not reject the
foreign substance, stem cells. That is done with chemotherapy, which Ms. Weimer
described thus: “They chemo you to the brink of death.” Then the patient’s
immune system is suppressed with drugs for 100 days until the stem cells take
and the immune system is rebuilt, cancer-free.

Like most stem-cell
recipients, she experienced a host of complications. Infection twice brought her
to the brink of death. Bacteria lurking in her knee caused a blood infection
that was almost fatal; another infection brought her to the brink of death a
second time. The medications she required, such as steroids, also destroyed the
bone in her hip (necessitating a hip replacement), and has caused permanent
damage to an eye.

“Was it all worth
it? Oh God, yes,” Ms. Weimer said. “That was the best-case scenario. Without the
transplant, I was dead.”

To donate stem
cells, visit www.blood.ca or phone 1-888-2-DONATE

 

April 4, 2012

Public
umbilical cord blood bank in Canada’s future

The Globe and Mail

Ottawa and the
provinces have just decided to invest $48-million over eight years to create a
cord blood banking system, one that should be up and running within a year.

Canada
is one of the few G20 countries without a public umbilical cord blood bank.
That’s about to change.

Ottawa and the
provinces have decided to invest $48-million over eight years to create a cord
blood banking system, one that should be up and running within a
year.

The umbilical cord,
which connects a baby in the womb to its mother, contains blood that is a rich
source of stem cells. The cord is usually discarded along with the
placenta.

In the coming years,
however, there will be an effort to systematically collect umbilical-cord blood,
particularly from babies who are aboriginal or of mixed race – groups for whom
it is nearly impossible to find stem-cell matches.

“Canada has unique
mixed-race ethnicities and aboriginal populations. That’s why we’re going to be
targeting those folks in particular,” said Sue Smith, executive director of
OneMatch Stem Cell and Marrow Network at Canadian Blood Services, which will be
managing the cord blood bank.

The program will
begin in Ottawa in the spring of 2013, then expand to Vancouver, Edmonton and
Toronto in 2014. (Quebec already has its own cord bank.) Collection kits will
also be distributed to hospitals and birthing centres where there are high
number of aboriginal births.

Cord blood can be
collected in-utero, just after the baby is born but before the placenta is
delivered, or ex-utero, extracted before the umbilical cord and placenta are
discarded. The blood will then be sent to a laboratory in Ottawa or Edmonton
where stem cells will be extracted, tested and cryopreserved in a special
freezer.

Canada’s cord blood
bank will be linked in a database to 44 others around the world, where there are
already more than half a million samples.

Currently, there are
a handful of private cord blood banks that allow parents to store their child’s
cord blood for personal use, should the need ever arise. This service costs
upwards of $1,000.

There are no fees
for the public cord bank and the stem cells will be freely available to any
patients who are a match, domestically or
internationally.


–ANDRÉ
PICARD

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