McMaster fraternity holds bone marrow/stem cell registry
2009 The Canadian Jewish News:
By CARA STERN, Special to The CJN: Thursday, 19 November 2009
Jewish students at McMaster University recently swabbed mouths
for a cause to collect DNA for the OneMatch bone marrow and
stem cell registry.
McMaster University’s Alpha Epsilon Pi chapter’s
philanthropic chair Dustin Shulman, left, helped register
about 760 students for the OneMatch bone marrow and stem cell
registry.
Managed by Canadian Blood Services, OneMatch has a database
that contains the tissue types of the registrants. This database
is used to find a match for patients awaiting a stem cell
transplant.
The registry, which took place on Nov. 9, was organized by
McMaster’s chapter of the international Jewish fraternity
Alpha Epsilon Pi.
Dustin Shulman, philanthropic chair for the chapter and main
organizer of the Got Swabbed event, said he was inspired to
plan the event when he heard the story of Jonathan Grossman,
a Thornhill, Ont., man who was searching for a bone marrow
match last spring.
“I was astonished by the determination to find a match
and the community’s positive response in finding one,”
he said.
Despite the transplant, Grossman died from chemotherapy complications
on Aug. 30.
Shari Silverman, a Thornhill woman with leukemia, is currently
seeking a match and has set up the Shari Mission, which aims
to collect registrants as potential donors.
Her family members volunteered in the McMaster drive through
recruiting students.
The Shari Mission recently organized several drives in the
Thornhill area.
The odds of finding a match are very low, said Shulman, explaining
that there is less than a 30 per cent chance of a match within
the patient’s family, and the chances decrease the further
outside their family they go.
He said there is ultimately less than a one per cent chance
of a registrant being paired with a patient through the database.
“We have over 760 people who were swabbed on Monday,”
he said. “That means, statistically, six or seven people
will have their lives saved because of this event.”
John Bromley, the national communications manager for OneMatch,
said the main message was to increase the number of Jews involved
in the registry.
“Even though Jewish people come under the Caucasian
group, they still have a better chance of finding a match
through the Jewish community,” he said, adding that
82 per cent of the registry is Caucasian, so there is also
a strong focus on promoting diversity in the registry in general.
The goal was to break the world record of new bone marrow
registrants collected in a single day.
Shulman said members of the fraternity stayed in the student
centre overnight because the record requirement was a 24-hour
drive.
Although they fell short of the record by about 200 people,
Shulman said the turnout was fantastic, with the final number
somewhere above 760 new registrants.
“The record isn’t the biggest deal,” he
said. “I think going for it and doing our best is what
it was really about.”
Jackie Brown, first-year representative for the Jewish Students’
Association, said she signed up to volunteer to help swab
for a couple of hours, but ended up staying for five or six
hours.
“It was an amazing experience,” she said. “A
lot of the time, if there’s a table set up in the students’
centre, people just walk by them, but we actually had lines
of people waiting to register.”
Bromley agreed the event was a huge success, and the fraternity
sent a strong message that they want to make a difference.
“Nothing else has come close to this within universities
and colleges in the country,” he said. “McMaster
University has set the bar very, very high for other groups.”
Widow continues to support bone marrow donor drive
By FANNIE SUNSHINE Oct 06, 2009 - 2:58 PM
Julie Grossman wants every single eligible person to sign up for bone marrow registry to potentially save someone's life.
Julie's husband, Jonathan, who underwent a bone marrow transplant in July, lost his battle with myelofibrosis Aug. 30.
"I encourage people to register," Julie said. "Everyone who wants to register should do so."
Jonathan was diagnosed in February with myelofibrosis, a rare chronic malignant hematological disorder affecting red and white blood cells. If left untreated, myelofibrosis can turn into an incurable form of leukemia.
A bone marrow transplant was the North York resident's only hope at prolonging life.
To help his chances of finding a match, Jonathan's family organized a bone marrow donor drive April 26 at Adath Israel Congregation at Bathurst Street and Wilson Avenue, which drew more than 1,400 people.
When the drive was over, Jonathan and his family then had the daunting task of raising $75,000(US) for bone marrow testing, which was completed in eight weeks.
Jonathan underwent the bone marrow transplant, which he told insidetoronto.com July 29 that he was "not a perfect match but it's as close as it's going to get."
"It looked like things were starting to take hold but the chemo was so toxic on his body that it destroyed his liver and kidney," Julie said. "We can't say whether (the transplant) was successful or not."
Along with his wife, Jonathan leaves behind daughter Jessica, son Jason and parents Dr. Harold Grossman and Faigy Nightingale Grossman.
Julie said she plans to support future bone marrow drives, including one for Thornhill resident Shari Ichelson Silverman in North York Oct. 20.
The drive will be held at the National Council of Jewish Women of Canada, Toronto Division, 4700 Bathurst St., from 3:30 to 8 p.m. A second drive for Ichelson Silverman, who was diagnosed with Acute Myelogenous Leukemia in July, will take place at the same location Nov. 1 from 10 a.m. to 3 p.m.
Canadian Blood Services' OneMatch Stem Cell and Marrow Network is responsible
for finding and matching volunteer donors for patients who
require stem cell transplants.
For the rest of this article by FANNIE SUNSHINE, please visit
InsideToronto
Without a transplant, blood disease will turn into incurable
leukemia
By Diane
Flacks, Special to the Star
Saturday Jun 13, 2009 04:30 AM
JENNIFER ROBERTS FOR THE TORONTO STAR
Jonathan Grossman, with his wife Julie and children Jessica
and Jason, is desperately searching for a donor.
"How do you feel," I ask Jonathan Grossman over
the phone.
"Ach, terrible" he says, laughing.
Grossman, 46, who lives in Toronto was diagnosed at the end
of February with myelofibrosis, a blood disease that affects
two in a million people. "My bone marrow, which normally
produces blood, is instead producing scar tissue," he
says. There is no drug treatment that can help. "Every
week, I get blood transfusions, until they can give me a bone
marrow transplant."
Without a transplant, this disease will turn into an incurable
form of leukemia; nobody knows when.
Last month, things took a turn for the worse. Grossman's
body started to reject some of the blood products he was getting
in his transfusions. "I've developed antibodies to them.
Timing is becoming more of an issue."
Grossman's doctors at Princess Margaret Hospital have been
painstakingly perusing the world-wide database of donors.
"There are 59 bone marrow registries around the world,
and they have co-ordinated their information."
His match could come from Timbuktu or Timmins. Most likely
it will be someone with his genetic and ethnocultural heritage
– someone from the Ashkenazi Jewish community.
His diagnosis was a call to action for the Grossman family.
"When something happens, you don't curl up into a ball.
If there is something to be done, you go and do it."
His children, Jessica, 19, and Jason, 17, have started a
Facebook group to encourage people to go online to Canada's
bone marrow collection agency, OneMatch Stem Cell and Marrow
Network, managed by Canadian Blood Services, and register
to become a donor. The group has grown to more than 6,000
members.
"Our family has a philosophy of full disclosure,"
Grossman says. "We have never hid anything from our kids."
In the fight for Grossman's life, his family found an unorthodox
method to find a donor. On April 26, Grossman's wife of 22
years, Julie, held a bone marrow donor drive in a North York
synagogue.
Julie Grossman comes on the phone to describe how she organized
the event. "I had lots of volunteers so that helped,
including Jonathan's 81-year-old mother. She's a ball of fire
... We took advantage of Internet and media – a letter
for help went viral."
But they did not get help from OneMatch at that time. Until
recently, the agency solicited bone marrow donors only through
their online donation system. In this system, you fill out
a form online and a cheek-swab kit is sent to you. You send
in your swab and it's analyzed and added to a donor registry.
If you are a possible match, more in-depth testing is initiated.
OneMatch was not willing to provide swab kits for the Grossmans
to hand out at their donor drive. With no time to waste, Grossman
ordered 2,000 bone marrow collection kits through a Florida
agency called Gift of Life.
As the drive started to heat up, the Grossmans anticipated
having a few hundred people show up, but "1,457 people
were tested in one day," says Grossman. "It was
very heart-warming and inspiring and motivating."
All the people who were tested by the Grossmans are added
to the American bone marrow registry, which is linked to the
world-wide database. If they are not a match for Grossman,
they may well save someone else's life.
There is a problem, though. The laboratory fees to process
each kit through Gift of Life in the States is $54 (all figures
U.S.) each or approximately $80,000 for all 1,457 of them.
The Grossmans don't have that kind of money, and so far, although
OneMatch has indicated a desire to help, it has not come through
with any funding.
"It's beyond frustrating. His match could be sitting
there waiting to be found," says Julie. "It's a
stress that Jonathan doesn't need."
OneMatch has since let Grossman know that it intends to change
its approach to collecting donors in the future, by supporting
drives like the one Julie organized. Lorna Tessier, director
of public relations for OneMatch was not willing to comment
on Grossman's case specifically, citing privacy concerns,
but did say that OneMatch did not have the capacity to conduct
drives until this year. However, she said, "We have participated
in four drives in the last six months." Onematch is hiring
three patient liason specialists to support patients during
the often lengthy and harrowing period from the time they
begin searching for a bone marrow donor to when a match is
found.
Meanwhile, Grossman's family has been organizing fundraisers,
and volunteers have switched from finding donors to finding
money to pay for the donor swabs awaiting processing in Florida.
Despite the bureaucratic frustration, Grossman got some cautious
good news recently. "I was told by my doctors that there
is a donor who is being further investigated on a detailed
level."
In the family tradition of full disclosure, Grossman details
the dark side of his best-case scenario. The cure may be worse
than the disease. "If we find a match, the bone marrow
is administered like any other transplant. Doctors will have
to use chemo and radiation to destroy my existing immune system.
They fry me and pickle me and bring me back to life."
Grossman laughs and I can hear Julie joining in in the background.
"Well, humour is a natural way to get through,"
Grossman reflects. "You know what Julie said when I was
diagnosed? `If you die, I'll kill you.'"
Julie comes on the line and admits, "Listen, we have
our moments, but you just have to go forward. What's the alternative?
We fall apart, we break up, he gets sicker, we get miserable.
After this, it will be my time to collapse, and boy, does
he owe me a vacation. We'll get him better, and then we can
negotiate."
Go to onematch.ca
for information on bone marrow donation in Canada, or theoffice.com
for updates on Jonathan Grossman's condition and ways to help.
Diane Flacks is a writer/actor/author living in Toronto.
dianeflacks.com.
By Bernie Rabinovitch, Executive Director
August, 2009
Adath
Israel Champions Many of my editorials have dealt with the
role the Adath Israel Congregation can play in helping us
lead a fulfilling life and with the sense of community that
our membership automatically provides. The direction I want
to go forward with is to highlight the richness of our membership
by focusing on the contributions that some of our members
have made for the betterment of the greater community as well
as stories of courage and sacrifice that our members have
valiantly displayed.
I am going to refer to these people as champions and the
first member that I want to profile is actually an entire
family of true champions in the face of adversity. Jonathan
and Julie Grossman were married in our shul in 1987, and have
been members ever since, making them second generation members.
Their family now consists of a daughter Jessica who is 19
and a son Jason who is 17.
They were leading a perfectly normal life as Jonathan worked
as an Internet website developer and Julie worked as a Clinical
Manager at baycrest. In early 2009, the dreaded news came
that Jonathan, at the youthful age of 46, was diagnosed with
a very rare blood disorder that could ultimately result in
an incurable form of leukemia unless a bone marrow transplant
could be arranged.
Talk about life playing nasty tricks on you. Just when you
are in the prime of your life and think you have things under
control; you are dealt a blow that shatters your world. Some
people may simply fold their cards and drop out of the game,
while others rise to the occasion to make the best of a very
difficult situation. The Grossmans fit into the latter category.
When the news was finally absorbed, the Grossmans swung
into action.
Julie, Jessica and Jason rallied around Jonathan to form
a tight knit family bond as it was only with the full support
of his family that Jonathan could manage to cope with his
disease at the level he did.
A match could not be found within Jonathan’s immediate family,
requiring a much wider search encompassing all the bone marrow
donor banks around the world. Jessica and Jason did not waste
any time waiting for any possible matches as they started
a Facebook group to encourage people to register to become
possible bone marrow donors.
Julie pulled out all the stops and with a team of volunteers,
arranged for a community wide bone marrow donor drive to be
held at our synagogue. The Grossmans probably set a world
record when 1457 people successfully passed the medical screening
and had their cheek swabbed in one day at our shul. Since
the Canadian Agency responsible for bone marrow matching,
OneMatch, wouldn’t participate in the Adath Israel drive,
the Grossmans retained the services of the Florida-based Gift
of life organization and were forced to fundraise to cover
the costs associated with having the swabs processed. Through
the generosity of family, friends, community, the shul and
even strangers, the Grossman’s fundraising efforts were completed
just 8 weeks later.
Through it all, the Grossmans have maintained their sense
of humour and their dignity and most important – their family
spirit and unity. They do not have time to be miserable as
they keep pursuing a brighter future. but, there appears to
be a bright light at the end of the tunnel as Jonathan was
scheduled for a bone marrow transplant at the end of July;
after this editorial had already gone to press.
Also, not to be forgotten is the possibility that some of
the people tested at our clinic will be a match for other
families in need. This was made possible through the Grossman’s
generosity and fundraising efforts. I have already been informed
that some attendees at our clinic have been contacted by the
Gift of life organization as a result of the cheek swab given
at the Adath Israel and advised that they may be a possible
match to help save other lives.
In the Ethics of our Fathers (pirkei Avos), rabbi Shimon
said there are three crowns – the crown of torah, the crown
of priesthood, and the crown of kingship; but the crown of
a good name surpasses them all. The Good name of the Jonathan
Grossman family is a perfect representation of rabbi Shimon’s
wise words and our congregational community is all the richer
for their being part of our chevra.
At this time, my daughter laura and I want to wish you and
your family a healthy, happy and a sweet new Year. Bernie
Rabinovitch
To read more about ADATH ISRAEL Congregation, please visit
www.adathisrael.com
. This article is part of the Adath Israel Sept
2009 newsletter (PDF: 7.5 MB, 40 pages).
North York resident to undergo bone marrow transplant
By FANNIE SUNSHINE
July 21, 2009 2:45 PM
Jonathan Grossman will celebrate his new birthday Tuesday, July 28.
The North York resident, who was diagnosed in February with myelofibrosis, a rare chronic malignant hematological disorder affecting red and white blood cells, has found a bone marrow donor match.
Grossman received the news July 14 and will check into Princess Margaret Hospital for operation preparation Wednesday, July 22. His transplant date is set for Tuesday, July 28.
If left untreated, myelofibrosis can turn into an incurable form of leukemia.
"It's not a perfect match but it's as close as it's going to get," Grossman said.
Grossman will undergo six days of heavy chemotherapy leading up to the transplant date. Once the transplant is complete, he will spend six to eight weeks in isolation before returning home. Recovery will take one to two years.
"Within the first two years is the highest risk for rejection," he said, adding doctors will conduct tests 28 days post-transplant to see how his body is reacting to the new bone marrow.
Grossman is fairly certain he'd like to meet his bone marrow donor, who he currently knows nothing about except the person's blood type, which is different from his own.
"My blood type will be changing," he said.
He can apply to Canadian Blood Services to find out the donor's identity one year after the transplant, he said, adding he wants to express his gratitude but is unsure just how to convey it.
"I really want to thank the person, no doubt about that," Grossman said. "But there is nothing you can say or do to really say thank you."
To help his chances of finding a match, Grossman's family organized a bone marrow donor drive April 26 at Adath Israel Congregation at Bathurst Street and Wilson Avenue, which drew more than 1,400 people.
When the drive was over, Grossman and his family then had the daunting task of raising $75,000 (US) for bone marrow testing, which was completed in eight weeks.
Canadian Blood Services' OneMatch Stem Cell and Marrow Network is responsible for finding and matching volunteer donors for patients who require stem cell transplants.
For the rest of this article by FANNIE SUNSHINE, please visit InsideToronto.com
T.O. programmer's worldwide search for donor to end with marrow transplant
By SHARON LEM, The
Toronto Sun, Sun Media. Last Updated: Last Updated: 21st
July 2009, 2:42am
Next week, a stranger will give Jonathan Grossman something
most take for granted -- his life.
The 46-year-old Toronto software programmer was diagnosed
in February with the blood disease myelofibrosis, which attacks
two in a million people.
Luckily for Grossman, a match for a bone marrow transplant
was found and he'll undergo the transplant on July 28 at the
Ontario Cancer Institute/Princess Margaret Hospital.
A bone marrow match was discovered somewhere in the world
after searching for months across 59 world bone marrow registries,
pleading for potential donors of his Ashkenazi Jewish heritage
to get tested and holding fundraisers to pay for the testing.
Grossman has no idea where the donor is from or anything
about the donor's background -- other than the fact the donor
has a 95% match to Grossman's genetic make-up and that Grossman's
B-type blood will change to O-type after the transplant.
"I'm one of the lucky ones who found a match, but there's
lots of people still waiting who can't even find a partial
match because their communities are not well-represented on
bone marrow data bases," Grossman said.
A bone marrow drive for Grossman was held in April and more
than 2,000 new donors were added to the worldwide bone marrow
registries. The drive cost $75,000 US and the money was raised
within two months to pay for the tests.
"We wish to thank every single person who made a donation,
every organization that helped us raise funds and every institution
that helped to promote our cause ... We are forever grateful
to the entire community for your efforts and support,"
Jonathan said on behalf of his wife, Julie, and their two
children, Jessica, 19, and Jason, 17.
Tomorrow, Grossman will undergo six days of intensive chemotherapy
and radiation to destroy his existing immune system in preparation
for the transplant.
"It's going to be nasty and I'm not looking forward
to chemo, but I hope it's going to save my life. We have to
have a positive attitude," Grossman said.
One Match Stem Cell and Marrow Network and The Otherhalf
Chinese Stem Cell Initiative will be holding a stem cell donor
drive for people aged 17 and 50 to be tested on Sunday from
11 a.m. to 4 p.m. at Scarborough Chinese Baptist Church at
3223 Kennedy Rd., south of Steeles Ave. E. Oral swabs will
be taken to collect DNA samples.
SHARON.LEM@SUNMEDIA.CA
For the rest of this article by SHARON LEM, please visit
The
Toronto Sun
Donors sought for dying pair
By SHARON LEM, The Toronto
Sun, Sun Media. Last Updated: 8th July 2009, 9:18am
Jonathan Grossman and Shuyi Fung don't know one another, but they're waiting for the same miracle.
The two Toronto residents both need bone marrow transplants to survive.
None of their families or friends are a compatible genetic tissue match.
Grossman, 46, a software programmer, was diagnosed in February with myelofibrosis and requires a donor of Jewish ethnicity.
Yesterday, a battery of tests was conducted to see if a donor with a partial match would be compatible.
"There is a donor who is not a perfect match, but doctors are considering whether they can still perform a bone marrow transplant with a partial match," said Grossman, a married father of two.
"My energy level is starting to dwindle and I can't wait too much longer. They're going to have to do something, so this partial match transplant will be my only hope."
'GIVES HOPE'
Fung, a Toronto dental clerk and mother of two, has been battling chronic myelomonocytic leukemia for three years and needs a donor of Chinese descent. "Even if you register and you're not a match for me, you'd be saving someone else's life and that gives me hope," Fung said.
Canada's One Match Stem Cell and Marrow Network has joined with OtherHalf Chinese Stem Cell Initiative in an effort to register more people of Chinese descent.
Less than 10% of Chinese patients have found a match because the donor pool is too small.
"The Chinese are really under-represented in the national registry. Time is of the essence and people are dying while waiting for a match," said OCSC co-chairman Susan Go.
A campaign drive is planned at Metro Square, on Steeles Ave., east of Warden Ave., Friday from 7 p.m. to 1 a.m. and Saturday from 1 p.m. to 1 a.m. for people between the ages of 17 and 50. Oral swabs will be taken to collect DNA samples.
SHARON.LEM@SUNMEDIA.CA
For the rest of this article by SHARON LEM, please visit
The
Toronto Sun
Video from Global
News:April 27, 2009: Global
News Toronto reports on the Bone Marrow Drive event. View
video excerpt on YouTube
below or visit The
Office.com on YouTube:
Community comes out to support North York man in bone marrow
donor drive
By FANNIE SUNSHINE
May 05, 2009 3:00 PM
More than 1,400 people came out for testing at a bone marrow donor drive April
26 for a North York man.
Some 1,457 eligible donors had their cheeks swabbed during
the drive for Jonathan Grossman, who is suffering from myelofibrosis,
a rare chronic malignant hematological disorder affecting
red and white blood cells which, if left untreated, can turn
into an incurable form of leukemia.
"It was a very successful event," Grossman said
of the drive, which was facilitated by Gift of Life Bone Marrow
Foundation and held at Adath Israel Congregation on Southbourne
Avenue. "We got some amazing numbers. We went into it
with the belief community support would be there. It became
a community event right from the beginning. It was heartwarming."
Now Grossman and his family are looking to raise $80,000
US to cover the cost of testing the swabs taken at the bone
marrow drive.
"We want to say thank you to the community," Grossman
said. "We are very grateful for the community support."
To donate, visit www.giftoflife.org
and click on Make a Contribution Today at the top right of
the page and select Jonathan Grossman Drive under the Fund
Allocation tab near the bottom of the page.
Individuals wishing to be tested for bone marrow donation
can get a free cheek swab test kit sent to them by mail by
filling out the online form at www.onematch.ca
Canadian Blood Services' OneMatch Stem Cell and Marrow Network
is responsible for finding and matching volunteer donors for
patients who require stem cell transplants.
For the rest of this article by FANNIE SUNSHINE, please visit InsideToronto.com
Three months ago, Steve Huet was so weak he couldn't walk 10 steps from his
hospital bed to the bathroom.
Last night, the 13-year-old boy from Fauquier, Ont. threw the first pitch at the Toronto Blue Jays game against the Texas Rangers at Rogers Centre.
Huet was born with dilated cardiomyopathy, a condition where the heart muscle deteriorates and congestive heart failure results.After undergoing a heart transplant at Sick Kids hospital on March 1, the Grade 8 student from the Timmins area was well enough to attend his first major league baseball game and throw the first pitch in honour of National Organ and Tissue Donation Awareness Week.
"The Toronto Blue Jays are my favourite baseball team," Huet said, adding he was nervous prior to meeting Jays manager Cito Gaston.
His mother, Chantal Gagnon, 37, said the difference in her son's health has been remarkable.
"He got sicker and sicker. At the end he was almost dying. It was scary," she said.
"Now I can run and walk and play. I think it's a good thing to donate organs to save people," Huet said.
"It is a miracle he got a heart. We want to thank the donor family for giving my son a heart and encourage others to donate organs," Gagnon said.
"We have 1,700 people in Ontario waiting for a transplant and we lose one person every three days on the waiting list," said Frank Markel, president and CEO of the Trillium Gift of Life Network. If you would like to register your organs, log onto giftoflife.on.ca or call 416-363-4001.
While Huet has received a miracle, Jonathan Grossman
is waiting for his.
The 46-year-old Toronto consultant -- who was diagnosed in February with myelofibrosis -- needs a bone marrow transplant to live.
"There are thousands of people who need bone marrow transplants. Unlike the donations of hearts and lungs where you wait until after you're dead to donate, bone marrow will regenerate itself within eight weeks so you can be a bone marrow donor more than once," the father of two said.
Grossman's best chance of finding a genetic match will come from those of Jewish ethnicity. Donors must be aged 18 to 60. Registration involves a simple swab of cells from inside the cheek.
This Sunday, the Gift of Life Bone Marrow Foundation, North America's Jewish donor registry, will hold a bone marrow drive from 10 a.m. to 5 p.m. at the Adath Israel Congregation Alex Tobias Hall, 37 Southbourne Ave. For information call 416-932-8132 or log onto TheOffice.com.
SHARON.LEM@SUNMEDIA.CA
For the rest of this article by SHARON LEM, please visit
The Toronto
Sun
Tuesday, 21 April 2009; Last Updated ( Wednesday, 22 April
2009 )
TORONTO – An important opportunity to be added to the international bone marrow registry and possibly save a life takes place Sunday, April 26, at Adath Israel synagogue on Southbourne Avenue. Registration involves a simple swab of cells from inside the cheek, and no blood is required at this stage.
Gift of Life Bone Marrow Foundation, North America’s Jewish donor registry, has been facilitating bone-marrow drives for 18 years. Those previously tested do not need to repeat the process.
Sunday’s drive was organized on behalf of the family of Jonathan Grossman, a married 46-year-old father of two, who was diagnosed with idiopathic myelofibrosis, a rare blood disorder. He has been undergoing weekly blood transfusions and urgently requires a bone-marrow transplant to survive.
The best chance of finding an eligible match lies with those of similar ethnicity, since blood-tissue type is inherited. Eligible donors must be 18-60 years of age and in general good health.
For more information, call 1-800-MARROW or go to giftoflife.org.
For the rest of this article by the Jewish Tribune staff, please visit
Jewish Tribune
Bone marrow transplant only cure for man's illness
Donor drive set for this Sunday in North York
InsideToronto.com, Toronto Community News, North York Mirror.
By FANNIE SUNSHINE
April 21, 2009 3:09 PM
Jonathan Grossman thought he was suffering from gastrointestinal problems.
"I hadn't been feeling well for several months," recalled the North York resident.
But testing revealed in February the father of two was suffering from myelofibrosis, a rare chronic malignant hematological disorder affecting red and white blood cells that, if left untreated, can turn into an incurable form of leukemia.
"Once what I had had a name, my options were pretty limited," Grossman said. "Drug therapy can control the symptoms but it's not a cure. The only cure is a bone marrow transplant."
A bone marrow donor drive for Grossman will be held Sunday, April 26 at Adath Israel Congregation, 37 Southbourne Ave., from 10 a.m. to 5 p.m.
More than 1,000 people are expected at the drive, Grossman said, adding numbers could reach 3,000.
Since tissue type is inherited, the best chance of finding a genetically matched donor for Grossman lies with those of similar ethnicity, so he is appealing for individuals of Jewish ancestry to come out for testing.
Testing at the donor drive involves swabbing of cells from inside the cheek. No blood is required at this stage. Eligible donors must be between 18 and 60 years old and in general good health. Those previously tested do not need to be retested.
"The intent of the drive is to really hit Toronto and it's been quite successful," said Grossman, adding fliers and posters have been distributed throughout the Jewish community.
Grossman, who is being kept alive by weekly blood transfusions, is suffering from anemia and feels "extremely tired", he said, adding he had to stop working because of fatigue.
And Grossman is finding it strange being on the receiving end of a drive, as his family has been active in charity work for years.
"They are coping quite well," he said of the family's reaction to his diagnosis. "We used it as a call to action. My son and daughter created a Facebook page dedicated to the drive and it has almost 6,000 members. My wife jumped on the bandwagon and put together a team (for the donor drive). I'm hoping I won't be the only one benefitting from it, other matches might come from it."
Individuals wishing to be tested but who can't make it out
to the donor drive can get a free cheek swab test kit sent
to them by mail by filing out the online form at www.onematch.ca.
Canadian Blood Services' OneMatch Stem Cell and Marrow Network is responsible for finding and matching volunteer donors for patients who require stem cell transplants.
DETAILS
Fewer than 30 per cent of patients who need stem cell transplants are able to find a match within their own families. The rest rely on the generosity of a donor who has volunteered to give stem cells to anyone in need.
As of October, there were about 600 Canadian patients waiting for a stem cell match. In 2007, 233 Canadians received transplants.
A wide variety of diseases and disorders are treated with transplants. These include specific forms of cancer like leukemias, lymphomas or myelomas. Others needing stem cell transplants include those patients with inherited immune system and metabolic disorders.
For bone marrow donation, the collection of stem cells is taken from the iliac crest in the hip and this type of procedure is done under general anaesthetic so the donor experiences no pain. Some donors have said they have experienced mild soreness after the procedure. The soreness has been compared to what it might feel like following hard exercise or a fall on the ice.
- Canadian Blood Services
For the rest of this article by FANNIE SUNSHINE, please visit InsideToronto.com
By LEILA SPEISMAN, Staff Reporter
Friday, 17 April 2009
TORONTO — The Toronto Jewish community has always responded
enthusiastically when asked to come out to be tested as bone
marrow donors.
We remember drives for Alison Atlas, Jay Feinberg, Audi Stanley
– when people of all religious streams, all social groupings
and all ages lined up patiently in the hopes of helping one
of our own. Once again, the call is going out.
Jonathan Grossman, 46, is a self-described “software
techie.” In February, he was diagnosed with idiopathic
myelofibrosis, a disease in which the bone marrow no longer
produces red or white blood cells, or platelets. There is
no treatment or cure, except for a bone marrow transplant.
A bone marrow testing drive, under the aegis of Canadian
Blood Services and Gift of Life, takes place Sunday, April
26, from 10 a.m. to 5 p.m. at Adath Israel Congregation. Eligible
donors must be between the ages of 18 and 60, and in general
good health. Unlike earlier drives, no blood is taken at the
drive, only swabs from the inner cheeks.
Ideally, six matching genetic markers are necessary for a
bone marrow donation to be successful. The best chance, then,
is either from the patient’s family, or, if there is
no family match – as in Grossman’s case –
from someone who comes from the same general geographic area.
Grossman said that originally doctors felt that his gastro-intestinal
symptoms were a sign of Crohn’s disease, which several
members of his family have. A long, frustrating course of
blood tests at Toronto’s Princess Margaret Hospital
this past February confirmed that he has idiopathic myelofibrosis.
Since then, he has had weekly blood transfusions to keep him
alive.
“It was a shock,” Grossman said. However, he
said, his wife, Julie, and his family took it as “a
call to arms. We were not blinded like a deer in the headlights
– we were motivated to do something. That’s what
our family is like.”
His daughter, Jessica, a student at the University of Western
Ontario, has a Facebook group, to get information out to the
public and to look for possible donors. He also has a younger
son, Jason. Both children – and Grossman himself –
are graduates of Bialik Hebrew Day School.
Julie Grossman, a clinical manager at Baycrest Hospital,
has organized the bone marrow testing drive at Adath Israel.
She said that she has arranged for six lead volunteers to
manage the event, so that things will run smoothly.
April 11, 2009: Jessica and Jason Grossman
recorded a Public Service Announcement (PSA) about the bone
marrow drive. Click
to listen to the Audio (MP3)
April 2, 2009: Jessica and Jonathan were
interviewed on the 1290 radio station in London, Ontario.
April 1, 2009: Jonathan and Family were
on A-Channel London News - April 1, 2009. View
video
March 31, 2009: Jessica Grossman spoke
about the search for bone marrow donors to help her father.
1069fm.ca X-Fm on March 31 2009. Click
to listen to the Audio (MP3)
