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The Canadian Jewish News

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.”

For the rest of this article, please visit The Canadian Jewish News










InsideToronto.com, Toronto Community News, North York Mirror.

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





Jonathan Grossman Bone Marrow Drive April 26 2009

Jonathan Grossman Bone Marrow Drive April 26 2009 Jonathan Grossman Bone Marrow Drive April 26 2009 Jonathan Grossman Bone Marrow Drive April 26 2009 Jonathan Grossman Bone Marrow Drive April 26 2009 Jonathan Grossman Bone Marrow Drive April 26 2009 Jonathan Grossman Bone Marrow Drive April 26 2009 Jonathan Grossman Bone Marrow Drive April 26 2009 Jonathan Grossman Bone Marrow Drive April 26 2009 Jonathan Grossman Bone Marrow Drive April 26 2009 Jonathan Grossman Bone Marrow Drive April 26 2009 Jonathan Grossman Bone Marrow Drive April 26 2009 Jonathan Grossman Bone Marrow Drive April 26 2009 Jonathan Grossman Bone Marrow Drive April 26 2009 Jonathan Grossman Bone Marrow Drive April 26 2009 Jonathan Grossman Bone Marrow Drive April 26 2009 Jonathan Grossman Bone Marrow Drive April 26 2009 Jonathan Grossman Bone Marrow Drive April 26 2009 Jonathan Grossman Bone Marrow Drive April 26 2009 Jonathan Grossman Bone Marrow Drive April 26 2009 Jonathan Grossman Bone Marrow Drive April 26 2009 Jonathan Grossman Bone Marrow Drive April 26 2009 Jonathan Grossman Bone Marrow Drive April 26 2009 Jonathan Grossman Bone Marrow Drive April 26 2009 Jonathan Grossman Bone Marrow Drive April 26 2009 Jonathan Grossman Bone Marrow Drive April 26 2009 Jonathan Grossman Bone Marrow Drive April 26 2009 Jonathan Grossman Bone Marrow Drive April 26 2009 Jonathan Grossman Bone Marrow Drive April 26 2009 Jonathan Grossman Bone Marrow Drive April 26 2009 Jonathan Grossman Bone Marrow Drive April 26 2009 Jonathan Grossman Bone Marrow Drive April 26 2009 Jonathan Grossman Bone Marrow Drive April 26 2009 Jonathan Grossman Bone Marrow Drive April 26 2009 Jonathan Grossman Bone Marrow Drive April 26 2009 Jonathan Grossman Bone Marrow Drive April 26 2009 Jonathan Grossman Bone Marrow Drive April 26 2009 Jonathan Grossman Bone Marrow Drive April 26 2009 Jonathan Grossman Bone Marrow Drive April 26 2009 Jonathan Grossman Bone Marrow Drive April 26 2009 Jonathan Grossman Bone Marrow Drive April 26 2009 Jonathan Grossman Bone Marrow Drive April 26 2009 Jonathan Grossman Bone Marrow Drive April 26 2009 Jonathan Grossman Bone Marrow Drive April 26 2009 Jonathan Grossman Bone Marrow Drive April 26 2009 Jonathan Grossman Bone Marrow Drive April 26 2009

Photos by Avocado Communications



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Toronto Star

2009 The Toronto Star

Busy searching for a new life

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.

For the rest of this article by Diane Flacks, please visit The Toronto Star Online





Adath Israel logo

Adath Israel Champions

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).








InsideToronto.com, Toronto Community News, North York Mirror.

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







Toronto Sun

Registry a life-saver

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






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:





April 14, 2009: Jonathan and family were on Global TV News and interviewed by reporter Lama Nicolas. More information about the Bone Marrow Drive on the Global website. View video excerpt on YouTube below or visit The Office.com on YouTube:





April 1, 2009: Jonathan, Jessica, Jason and Julie Grossman were on CTV A Channel TV News. View video excerpt on YouTube below or visit The Office.com on YouTube:















InsideToronto.com, Toronto Community News, North York Mirror.

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







Toronto Sun

News Toronto & GTA: A new heart, a new life

First pitch 2 months after surgery

By SHARON LEM, The Toronto Sun, Sun Media



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







jewish tribune

Simple swab test can save a life

Written by the Jewish Tribune staff

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







InsideToronto.com, Toronto Community News, North York Mirror.

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






The Canadian Jewish News

2009 The Canadian Jewish News


Bone marrow testing drive planned at Adath Israel


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.

For the rest of this article by LEILA SPEISMAN, please visit The Canadian Jewish News Online







106.9 THE X - London Radio Fanshawe College

April 14, 2009: Jessica Grossman, spoke to 106.9 THE X - London Radio about the April 26th, Bone Marrow Drive.
Click to listen to the Audio (MP3)








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