Canada's first cord-blood bank is expected to be approved by provincial governments in June. Canada's provincial deputy health ministers are meeting in June to approve the business plan for the cord-blood bank, at a cost of $7 to $10 million. It's expected to cost $2 million a year to run it.
A national opinion poll last year found 89 per cent of Canadians support a national bank, and 85 per cent would be interested in donating if they had children.
To read the full article on Canada.com please click here.
Canadian Blood Services forecasts 900,000 units of blood will be needed in 2008, with hospital demand continuing to grow by 2% each year. That amounts to 17,000 extra units of blood this year alone.Patients undergoing cancer treatments are one of the largest blood recipient groups in Canada. To read the full article in The Brampton News, click here.
A Blood Drive is being held in Honour of Katelyn Bedard Thursday, April 10, 2008 between 3-pm and 8pm at St.Anne's Parish Hall in Tecumseh. Please call 1-888-2DONATE to book your appointment for the clinic or for another time that is convenient for you. Please help us support those receiving bone marrow transplants.
Cristina Copa, a Portuguese woman living in Leamington, Ontario is in desparate need of help from the Portuguese community. She needs a life saving bone marrow transplant immediately but tragically there is no match for her in the world bone marrow registry. Cristina needs to find someone with the same human leukocyte antigen (HLA) type. HLA type is inherited and as a result, the donor typically has to have the same ethnic background as the patient. Cristina and her family are reaching out to the Portuguese Community imploring people to join the bone marrow registry to possibly help Cristina or someone else that is in dire need of a bone marrow transplant.
Cristina was diagnosed with Non-Hodgkins Lymphoma in 2001 when she was just 36 years old. She has endured many rounds of chemotherapy and has enjoyed brief periods of remission. However, she has now had multiple relapses and the only treatment that can help her is a bone marrow transplant. Cristina understands the seriousness of her disease and is reaching out for help not just for herself, but for the many others that also need a bone marrow donor to save their life.
The Copa family is holding a fundraiser for Cristina in Leamington on March 30, 2008:
| Cristina Copa Fundraiser | |
| Date: | Sunday, March 30, 2008 |
| Time: | Lunch starts at 1:00pm |
| Location: | Portuguese Community Club, Talbot St., Leamington, Ontario |
| Menu: | Pasta, chicken, salad and desert |
| Tickets: |
Adults - $20, Kids 5-12 - $10, Kids 4 and under - Free Tickets required in advance Phone 519-322-1936 / 519-981-9418 for tickets |
Note: The Cristina Copa fundraiser is not a Katelyn Bedard Bone Marrow Association event. However, the Katelyn Bedard Bone Marrow Association will be at this event to present information about bone marrow donation and to answer any questions you may have about how to join the bone marrow registry.
1,100 residents from British Columbia took part in a new method of registering with OneMatch that is quick, easy and does not require taking a blood test. It starts by registering online at www.onematch.ca, then a free buccal swab kit is mailed to your home with instructions and a postage paid return envelope. The process is as easy as brushing your teeth to obtain a sample of your DNA which is then sent back to the Canadian Blood Services HLA lab and extracted for HLA typing and added to the OneMatch database of 227,000 Canadians. This database is used to help life-threatening illnesses such as leukemia, lymphoma or Sickle-Cell disease all over the world.
You can read the full story here for more details.
Rihanna and her charity Believe has joined forces with DKMS the world's largest non-profit marrow donor center to help find donor for New York mother of two Lisa Gershowitz who is battling leukemia.
You can read the full story here for more details.
A 12 year old boy from Swan Lake had the opportunity of meeting his bone marrow donor for the first time in New York City. Cole was first diagnosed with acute lymphoblastic leukemia in 2001. Four years later, doctors discovered he had developed a secondary adult form of the disease. In 2005, Cole received a successful bone marrow transplant from outside Canada. To read the full story in the Winnipeg Sun, please click here.
GVHD is a serious, some times fatal complication of bone marrow transplants. According to the National Marrow Donor Program, "In GVHD, the immune cells from the donated marrow or cord blood (the graft) attack the body of the transplant patient (the host). GVHD can affect many different parts of the body. The skin, eyes, stomach and intestines are affected most often. GVHD can range from mild to life-threatening." Dr. Perreault is working to develop a simple test to screen candidate donors prior to being selected to determine if they would put the recipient at a higher risk for GVHD.
Dr. Claude Perreault is the Principal Investigator, Immunobiology Laboratory, Institute for Research in Immunology and Cancer. He is also a Full Professor, Department of Medicine, Université de Montréal and a Hematologist, Maisonneuve-Rosemont Hospital. He is currently the Canada Research Chair in Immunobiology. Additional information about Dr. Perreault and his work can be found here:
Profile at IRIC
French language article published in FORUM
Globe and Mail article
The Katelyn Bedard Bone Marrow Association will continue to support Dr. Perreault's research on an ongoing basis. This is only possible thanks to the help of our generous supporters. If you would like to make a donation, follow the link on our ways you can help page.
About our Research Sponsorship Program.
A young girl from Fall River, Nova Scotia celebrated with her family this December when she was given the news from her doctors that she is in remission due to a bone marrow transplant.
She was diagnosed last winter with a rare blood disorder known as myelodysplastic syndrome (MDS), which develops into acute myeloid leukemia. A life saving bone marrow transplant was required, and the cry went out in her home community of River Hebert and beyond, seeing over 1,000 friends and family members rushing to register as possible donors.
Five months later a partial match was found from the International Bone Marrow Registry. To read the full article in The Amherst Citizen, please click here.
The Katelyn Bedard Bone Marrow Association is urging anyone between the age of 17 - 50 to become part of Canada's One Match Stem Cell and Marrow Network. At an event organized in recognition of 23-year-old Kevin Couvillon who needs to find a bone marrow donor, another local Windsor donor had the opportunity to share his experience as a bone marrow donor. To read more about his story please click here to read the full Windsor Star article. Someone is looking for a needle in a haystack.... you might be the needle!
A few weeks ago, Kevin received the devastating news that there is no match for him in the worldwide registry of bone marrow donors. You might be able to help Kevin or someone else in the same situation. Please consider adding your name to the list of people that are willing to donate bone marrow by joining the bone marrow registry. More information about donating bone marrow and joining the bone marrow registry in your country can be found here. Also, click here to see a great video that explains the donation procedure.
If you’re willing to join the registry, please don’t delay. Make the gift of life the best Christmas present you have ever given!
From the December 6 edition of the Windsor Star:
MPP Bruce Crozier (L -- Essex) has reintroduced the Katelyn Bedard Bone Marrow Awareness Month Act in the Ontario legislature.
The private member's bill would proclaim November as Bone Marrow Awareness Month.
Lourdess Sumners is battling Acute Myelogenous Leukemia. Her best chance of survival is a bone-marrow transplant. She is in desperate need of a donor from the Asian or Filipino community. If you know of anyone in these communities please have them go to www.onematch.ca.
To read the full article on www.canada.com, please click here.
A newborn saved her 11-year old brother who's leukemia returned agressively. Now the boy is 17 years old and healthy. To read more about this family and how the cord blood from their newborn saved their son, click here for the Windsor Star story.
It will soon be even easier to join the bone marrow registry in Canada. One Match Stem Cell and Marrow Network has just announced that they are changing the process to become part of Canada's Bone Marrow Registry. Once you register at www.onematch.ca, a swab kit will be mailed directly to your home with instructions and a return envelope. This new process is being launched in British Columbia and is intended to roll out national later this year. To read the press release, click here.
Canadian Blood Services is re-branding the former "Unrelated Bone Marrow Donor Registry" to "OneMatch Stem Cell and Marrow Network".
The purpose of this re-branding is to address the critically low shortage of ethnic registrants. To read the full press release click here.
OneMatch.ca Launch Party to be held in Vancouver on November 3rd, 2007 and in Toronto on November 7th, 2007. To find out more about the details, click here.
For more information about Dany, visit www.helpdany.com. Dany's family is raising money to have people in Nicaragua tested and added to the bone marrow registry. You can make a donation on their web site. There is also more information about Dany at www.donorcorner.com/.
Attention Ontario residents. As election time nears, please ask your local candidate about cord blood. Do they support a national bank? What are they going to do about it? Canadian Blood Services is asking provincial and territorial governments for funding. You can help by choosing a Candidate that will take action.
 |
 |
 |
Bowling for Bone Marrow 2007 was held this past Saturday, August 25 at Bowlero and was an enormous success raising over $17,000. It was a fun family event with over 155 bowlers on hand. There were children’s activities, a strike throwing contest and some really nice door prizes such as a Broil King BBQ, Nintendo Wii, Children’s Bicycle, Detroit Tigers tickets and more. A huge thank you to everyone that collected pledges and came out to this event. Thank you as well to our generous sponsors!
Click here to see more photos from Bowling for Bone Marrow 2007.
“Good news everyone. I found a match. It is not a perfect match but it is a 9/10 match. The donor is extremely committed. His commitment is so strong that he was willing to pre-pone his stem cell donation to fit my doctor's recommendations. I can't express how much this means to me. In the past I wrote about how one of the potential donors became "unavailable" due to a lack of family support. This is not the case here. You, as volunteers and activists, deserve the credit in the change in our community's mentality and their conviction to be a COMMITTED DONOR.
Tomorrow morning I will begin my journey into the transplant process. I will be admitted and have several procedures done, including placement of 2 Hickman catheters. The transplant will be a long and arduous process but your support and well wishes will get me through these difficult times. I love reading all the "show of support" comments and it really brightens my spirits.
Many of you stay connected to me through this wonderful website. Many of you I know and many of you I have heard of through my family and friends. I will do my very best to keep you up to date on my progress. And even if I am unable to write, I will have Rashmi relay my sentiments. I hope to have new updates at least a few times a week.
Team Vinay should be proud of all it has accomplished. In the short few months that you all have been active, we have registered over 23,000 South Asians. This is clearly over a 20% increase to the existing number of S. Asians on the registry. And as you may know a few of the marrow registrants through Team Vinay drives have already been contacted as being potential donors for others in our community. Through your tireless efforts we have also achieved a few more significant goals. Team Vinay, working along with NMDP , is responsible for implementing a protocol for culturally competent callbacks for potential S. Asian donors. Another wonderful outcome is the creation of a S. Asian specific website that will serve as a sustainable informational and educational tool for our community for the years to come. The content of the website is growing and will include input from key Team Vinay members - it should be up and running next month!
This past week has been amazing. I have enjoyed my short yet fulfilling week at home, spending time with Rashmi and other family and friends. We watched Rush Hour 3, had a BBQ and played dominoes. Thank you all again for your unwavering support and well wishes.
Much love to you all;
Vinay."
 |
 |
 |
The John Fox Memorial golf tournament, held on Sunday, August 12 at Tilbury Golf Club was a great success again this year. It was a beautiful sunny day and the 65+ golfers who participated had a great time. Over $4,000 was raised for the Katelyn Bedard Bone Marrow Association at this event. Many thanks to Ken Roughton, Dennis Kelly and the John Fox Memorial committee for putting on such a wonderful event. We hope you will join us next year!
Click here to see more photos from the John Fox Memorial golf tournament.
Canada, Carolyn Mayea presents
a cheque for $5,000.
When a person needs a bone marrow transplant they cannot work for many months and in most cases their caregiver is not able to work either. Transplants are only performed in a few hospitals in Canada so the family typically must live away from home for a few months. The lack of income coupled with increased expenses from having to live on the road can be quite devastating. Dealing with a life threatening disease is stressful enough; the Bone Marrow Transplant Family Support Program aims to reduce some of the financial burden.
The expansion of the program is possible thanks to generous donations from the community. Proceeds from an upcoming bowl-a-thon on August 25th, 2007 in Windsor will go toward funding the program as well as a generous gift of five thousand dollars from Green Shield Foundation Canada. “We are very grateful to Green Shield for supporting us in this way and for making our dream of expanding to Windsor Regional Hospital a reality” says president, Bryan Bedard. Prior to the expansion, the program was only available to families at Children’s Hospital of Western Ontario in London. With the association based in Windsor, the board is very happy to now offer this wonderful program in their home community as well.
Application forms for the Bone Marrow Transplant Family Support Program are available by phoning 519-564-4119, from the social worker at Windsor Regional Hospital or Children’s Hospital of Western Ontario.
Have you wondered what it is like to donate bone marrow? We are very fortunate that Steven R. McEvoy has taken the time to document his experience. Here is Steven's Story that is published in Imprint and Steven's Blog.
In February 2007 we reported on an article telling the story of Calgary's Evan Pogubila. Evan fought a battle against a rare immune system disorder, often referred to as 'bubble boy disease'. Sadly Evan Pogubila lost his battle on June 30, 2007 from complications that arose following a transplant operation at the Toronto Hospital for Sick Children in March. To read more in The Calgary Herold, please click here.
Two dozen experts met on the issue of a Public Cord Blood Bank, in Ottawa and all agree that there are not enough umbilical cord donors to meet the growing demand in Canada. Click on the following CTV and CBC links below to read more about this exciting news.
The Katelyn Bedard Bone Marrow Association is proud to announce that on May 31st, Bill 225 was Ordered for Third Reading. Essex MPP Bruce Crozier introduced his new Private Member’s Bill, the ‘Bone Marrow Awareness Month Act, 2007’ for first reading in the Ontario legislature on May 15, 2007. If passed, the bill will make the month of November of each year Bone Marrow Awareness Month. The creation of this bill was inspired by Katelyn Bedard and her parents, Joanne and Bryan, founders of the Katelyn Bedard Bone Marrow Association. Katelyn lost her battle with Leukemia at the tender age of three and a half, when she was unable to find a match within the bone marrow registry for the life-saving donation she needed.
Bryan and Joanne Bedard were in attendance at Queen's Park last Thursday for Second Reading of the bill. "Having Bone Marrow Awareness Month declared will bring added legitimacy to our cause,” said Bryan Bedard. “With hundreds of Canadians needing a bone marrow transplant each year, it is imperative that people educate themselves about the bone marrow registry and add their name to the list of potential donors to bring hope to those that desperately need to find a match to save their life.”
“My hope is that the memory of Katelyn Bedard inspires people to register to donate their bone marrow,” says MPP Crozier. “There are plenty of people throughout Essex County and the province of Ontario whose lives depend on it.”
Click on the link below to see the current status of Bill 255.
http://www.ontla.on.ca:80/web/bills/bills_detail.do?locale=en&BillID=1667
Chris LoDuca was diagnosed in 2003 with chronic myelogenous leukemia. In 2005 he received a peripheral blood stem cell transplant that saved his life. He is now encouraging others to join the registry. To read the full article in The Windsor Star please click here.
"Canada does not have any large public-access, taxpayer-supported cord-blood banks. Instead, policy-makers have stood by while the collection and “banking” of this valuable resource has been commercialized, with parents who can afford it paying around $1,000 plus a yearly fee of over $100 to store their child’s cord blood. Upwards of 40,000 cord-blood samples are stored privately in Canada—approximately twenty-five times more than are stored publicly—and they are only available to immediate family members.
The chance of a family with no known risk factors needing this blood is remote. Dr. John Doyle, a pediatric hematologist at the Hospital for Sick Children, says that only about 1 in 150,000 families will use the cord blood they've paid to store if there is no diagnosed cancer in a sibling and no known metabolic disorder in the family.
The fact remains that cord-blood stem cells are a proven lifesaver, particularly for children who have been treated for cancer. Three years ago, it was Champagne who urged Héma-Québec, the province’s counterpart to Canadian Blood Services, to establish Canada’s only comprehensive publicly supported cord-blood bank. “I don’t know why there is not more interest in cord blood in the rest of Canada,” he says. More than one-third of terminally ill Canadian children who needed transplants from an unrelated donor could not find a match in 2005, reports Dr. Lothar Huebsch, former president of the Canadian Blood and Marrow Transplant Group. Huebsch estimates that each year, a matching source of hpcs from an unrelated donor cannot be found for between fifty and seventy-five children (and more adults) with acute leukemia, most of whom die from their illness. (The best source of hpcs is an hla-identical sibling without the disease, but only about a quarter of those who need transplants have such a sibling.) "To read more of this article from The Walrus Magazine click here.
Nick, 33, is in a desperate search to find a bone marrow donor match. He was diagnosed with Non-Hodgkin's Lymphoma in 2000 shortly after his wedding day. He received a stem cell transplant after going through chemotherapy and was in remission until recently.
The father of two -a four year old son and eight-month-old daughter - thought he got his life back until recently being diagnosed with leukemia. The home renovation contractor now needs a bone marrow transplant. To read more please view this article on 680news and to view Nick's website please click here. Someone is looking for a needle in a haystack… you might be the needle!
Through collaboration with the Barbara Ann Karmanos Cancer Institute, St. John Hospital and Medical Center has collected about 100 units of cord blood each month since June 2005. To read more on the Metro Detroit initiatives in The Detroit News click here.
New guidlines from the American Pediatrics urge parents to donate their newborn's cordblood in order to save someone's life today. Parents should consider private storage only if an older sibling has cancer or certain genetic diseases that cord blood is proven to treat. Otherwise, everyone else should consider donating their child’s cord blood. The odds that a child would need an infusion of his or her own cord blood later in life are slim, between one in 1,000 and one in 200,000. To read the full article on msnbc please click here.
A 8-month old boy from Calgary's best chance for survival is a bone marrow transplant, which is not available in Calgary. Evan Pogubila suffers from severe combined immunodeficiency disease and has been living in isolation for three months. He is waiting for a call from Toronto's Hospital for Sick Children to say a bone marrow donor has finally been found. If a donor is found Evan and his family will have to move to Toronto for at least a year. Alberta will cover the medical expenses but the family must absorb all other expenses such as rent which can be $3,600.00 a month. To read the full article at the Vancouver Sun, click here.
A Chicago woman has been leukemia free for 4 1/2 years after receiving a cord blood transplant. Most cord blood transplants are done on children because there are not enough cells in one donation to treat an adult. However, doctors have begun treating adults with cord blood from two babies. Donating umbilical cord blood saves lives. Click the following link to read a Chicago Sun-Times article about Rhonda Kottke and her cord blood transplant: Full Story.
Canadian researchers believe that they have found a way to predict whether bone marrow transplants from specific donors are likely to trigger rejection. If corroborated, this work would give doctors better information when selecting a donor for a patient and hopefully avoid life threatening complications such as chronic Graft vs. Host Disease. To read the Globe and Mail article about this discovery click here.
If you have not already become part of the Bone Marrow Registry, please click here for more information or click on the appropriate country in our Join the Registry section.
The Katelyn Bedard Bone Marrow Association has been approved as a registered Canadian charity by Canada Revenue Agency. This means that we can now issue a Canadian charitable donation tax receipt for all donations received.
The funds we raise are used to support our awareness efforts and to fund our family support program. Any help you can provide is appreciated. You can make a donation to the Katelyn Bedard Bone Marrow Association online through the PayPal service:
We are very pleased to announce that the Katelyn Bedard Bone Marrow Association has signed up for the Canadian Blood Service's 'Partners for Life' Program.Partners for Life is a nationwide program that is designed for corporate and community organizations. By joining the program,our organization made a commitment to save lives by donating blood as a team. The need for blood is ongoing, and patients that are treated for such things as leukemia, surgery, other cancers, and trauma depend on a stable supply of blood year round, which is why Partners for Life organizations have the power to save lives!
Patients that undergo a bone marrow transplant need a large number of blood transfusions both before and after their transplant as well as during their initial treatment. Including their pre-transplant treatement, it is not uncommon for a transplant patient to need over 100 transfusions. These patients cannot survive without the support of blood donors in their community. We feel this is another excellent way to help patients faced with a bone marrow transplant.
The KBBMA has pledged to donate 30 units of blood in 2007. If you would like to help the Katelyn Bedard Bone Marrow Assoction achieve or surpass our pledge please contact us at info@givemarrow.net for more information. To have your blood donations counted towards our goal, click here to download a form that you can bring with you the next time you donate blood at a Canadian Blood Services clinic.
If your company or community group is interested in joining Partners for Life as well, please visit the Canadian Blood Services web site for more information.
It is with a great deal of frustration that we report that someone is fraudulently sending spam e-mail messages that are doctored to appear to be from someone@givemarrow.com. Please rest assured that these messages DO NOT originate from our organization and we are unfortunately the target of a malicious attack. Please refer to this article for more information about this type of attack:
The United States government is looking to fund a national umbilical cord blood bank.
This is great news as too many patients are unable to find a bone marrow donor through
the bone marrow registry. Here is an excerpt from the Associated Press article that
appeared on the MSNBC web site on October 16, 2006:“Sixty percent, if not more, can’t go on because they can’t find a donor,” said Wagner, who works at the University of Minnesota Cancer Center.
Prospects may improve in coming years for the 15,000 blood cancer patients each year who can’t find suitable transplants.
The federal government is moving aggressively to create the first national banking system for umbilical cord blood, which contains the same potentially lifesaving stem cells as bone marrow.
“We can find donors for everyone. When I say everyone, upward of 90 percent,” Wagner said.
Click here to read the full article.
There is a statistic quoted in the article that is worth emphasizing:
That is a truly alarming number of patients that are unable to get the transplant they desperately need. Please do what you can to help by joining the bone marrow registry today!
British actor Malcolm Frederick has been diagnosed with a form of Non-Hodgkins Lymphoma called Mantle Cell Lymphoma and needs a bone marrow transplant to cure his disease. His siblings are not a match so he needs to find an unrelated donor. An article about Malcolm and his search for a donor appears on the Black UK Online web site.
In Canada, the bone marrow registry is comprised almost entirely of Caucasians. Since patients require that their donor be of the same ethnicity, it is problematic that certain ethnicities are under represented in the bone marrow registry. Here are some statistics about the Canadian Unrelated Mone Marrow Donor Registry published in a Toronto Star article on October 2, 2006 that illustrate the pressing need for donors of various ethnicities to step forward and join the registry.
Approximately 230,000 Canadians are registered:
| Ethnicity | % of Registry |
|---|---|
| Black | 0.5% |
| Aboriginal | 1% |
| East Indian | 1.6% |
| Asian | 3.6% |
| Hispanic | 0.3% |
| Caucasian | 83% |
Please join the registry today!
Here is an excerpt from an article in the Memphis Business Journal about the success that St. Jude Children's Research Hospital is having with performing transplants using partially matched parents as donors.
Under the guidance of hematologist Gregory Hale, St. Jude clinicians have successfully demonstrated a technique for blood stem cell transplants from close relatives to attack leukemia that has already resisted standard treatments
The technique harvests stem cells from parents and unmatched siblings; that closeness avoids the need of an aggressive onslaught of toxic chemicals that typically accompanies transplants. It means a majority of patients with leukemia and non-cancerous blood disorders may be candidates for stem cell treatment.
Read the complete article here.
Children's Fest 2006 took place the weekend of Sept. 16 and 17. The Katelyn Bedard Bone Marrow Association was happy to participate in this wonderful event. There were lots of fun things for kids to do. The Windsor Fire and Police departments were on-hand to let the kids hop inside a real fire truck and police car. Throughout the day, a variety of groups came on stage to entertain the crowd, with singing, dancing, gymnastics demonstrations and more. A number of exhibitors had a booth setup with an imagination station for the kids.
As always, this year's Children's Fest was a huge success. Congratulations to Rotary Club of Windsor for organizing such a great event and thank you for inviting KBBMA to participate. A big thank you to the volunteers that helped out at our booth throughout the weekend!
The 5th annual John Fox tournament was held on Sunday August 20, at Tilbury Golf Club in memory of our good friend.
Through the generosity of the 88 participants and numerous sponsors, $4,500 was raised for the Katelyn Bedard Bone Marrow Association (KBBMA).
We would like to thank all the participants and sponsors. A special thank you to: Herald Press, Tilbury Golf Club, Don 'Sparky' Leonard of Provincial Chrysler, Herb Newton of the Unity Group, Green Shield, CUPE Local 543, CAW Locals 444 and 200, Berkshire Group, Deloitte, Dr. John Bell, Freeds, Generex, Great Lakes Safety Products, Keg, Indcom Leasing, Motor City Community Credit Union, National Bank, PondsnPlants, Spagos, Tamar Building Products, Tecumseh Golf, University of Windsor Ctr. For Executive Education, Village Green Golf Range, Walk in Mortgage Place and the Windsor Family Credit Union.
Ken Roughton, Dennis Kelly and Fred Teno
On behalf of KBBMA, our sincerest thanks to Ken, Dennis and Fred for organizing this wonderful golf tournament.
We would like to announce that our First Event for KBBMA 'Bowling for Bone Marrow' was a Success! We would like to extend our thanks to our 147 Bowlers and their generous sponsors. Thanks to you, we raised over $14,000.00. Our number one goal for Saturday was to put on an event that would be fun for the whole family. As you can see in the pictures, it was accomplished. We would like to extend a big thanks to Bowlero for giving our event its home and providing our guests excellent service. Another big thanks to our event sponsors,
Canadian Tire - Walker Rd
Rob Sassine & Staff 29Park
Mancuso's Trattoria
Moxie's Classic Grill
Nancy Leavoy
Rene & Melba Bedard
Amelia and Nicole - for bringing smiles to our faces
With your support, we can make a difference. Remember, talk to your family and friends about the Bone Marrow Registry, it saves lives.
Click the images below to view larger size.
 |
 |
 |
It is with great saddness, to report that Uzoma has passed away last night. Uzoma fought a courageous battle with leukemia, unfortunately a bone marrow donor could not be found.
We would like to offer our sincere condolences to the family and friends of Uzoma. We will always remember Uzo's strength, and willingness to fight this disease.
You are all in our prayers.
Updated August 15, 2006: Here is an open letter written by Uzo's brother, Ogo:
My brother Uzoma Ifeanyi Azuh passed away to be with the Lord yesterday Sunday, August 13th at 8:30pm. After 8 rounds of chemotherapy, he died of multi-organ failure before he could find a match. Uzoma fought for his life; he begged to live. Even when the doctors told him to go home, he refused and said "And do what? Go to Disneyland? What else am I going to be thinking about?"
His campaign was for Bone Marrow donation awareness and testing-- so that no one would EVER have to go through what he or my family went through. Uzo's philosophy was always. if things were hard for him, he would make it easier for the next person. He is my brother and I can assure you, that he was as close to a perfect human being as you could find. He was the most selfless individual I know. His faith in humanity encouraged him and his faith in God strengthened him. This World lost an unbelievable gift. Uzo was loved by all he had the pleasure of being in contact with; Uzo loved all. He will be missed dearly.
In the mean time, please, continue to spread the word about Leukemia; to give minorities and others like Uzo a chance of survival. It's a small world after all! All we can do as humans is to do the best for one another while we live. Thank you to those of you who took the "HLA Bone Marrow Typing" test and to many more of you who will. May the good Lord bless each and ev eryone of you abundantly. I will continue championing this cause that took Uzo's life. Uzo has received the Chrysler award along with his friend Ron Giles (www.donorcorner.com), for the awareness they have brought to Bone Marrow Typing. Please continue Uzo's legacy by joining me in increasing names in the Bone Marrow Registry especially those of under-represented minorities across the country and around the globe-- because you never know who you could save with your God-given genes. Also, if you know any who are pregnant ask them to ask their doctors about donating their baby's umbilical cord to the National cord blood registry.
Thank you all so much for supporting us and others who have or will in the future fall victim to this terrible illness.
Ogo Azuh
Funeral Service Information: 3005 Temple Dr.
Windsor Ontario, Canada
Thursday Aug 17, 2006 10:00am
Interment Information
Greenlawn Memorial Gardens
Hwy #3 Windsor Ont Canada
Visitation Information: Families First Funeral Home & Tribute Centre
3260 Dougall Ave.
Windsor, Ontario Canada
4:00pm to 9:00pm Wednesday Aug 16th
For funeral information: www.familiesfirst.net
Reminder that our Bowling For Bone Marrow is this month on August 26th. We would love to see you, your friends, family come out and 'Throw a Strike for the Gift of Life'. Funds raised in this event will help us achieve our goals for our Bone Marrow Transplant Family Support Program and educate our community on the NEED to join the Bone Marrow Registry.
If you are unable to attend our Bowling For Bone Marrow Event and would still like to help, please make a Donation by clicking the button below:.
We look forward to seeing you and having a great day!
In 2001, Mrs. Patrizia Durante was diagnosed with leukemia when she was 27 weeks into her first pregnancy in Montreal. Prior to the delivery of her baby, Patrizia had the foresight to ask her doctors to collect and store her child’s umbilical cord blood. At thirty-one weeks gestation, a healthy Victoria Angel was born, and her umbilical cord blood stem cells were collected and cryopreserved. This decision, ultimately, is why Patrizia is alive and well today. All other treatment modalities had failed for Mrs. Durante and fortunately her baby’s umbilical stem cells matched Patrizia’s needs. These cells replenished her bone marrow and cured her leukemia. Little Victoria Angel had saved her mother’s life.
In early 2004, a company 'Cells for Life', located in Markham, Ontario took the steps necessary to address the need of publicly-accessible cord blood bank in Canada, they created the Victoria Angel - Registry of Hope. The goal for Cells for Life is to maintain a private cord blood storage facility and to establish a publicly-accessible cord blood progam as an adjunct to their present sevices.
Members of the Cells for Life team believe that, in the perfect world, everyone should bank their child’s cord blood. However, it is estimated that less that 1% of parents in North America, at present, store their child’s cord blood at birth. The rest of the valuable cord blood is thrown away as waste! Many people are unaware of the potential that the stem cells hold. Unfortunately, not everyone realizes that they have access to this important treatment option.
To read more about Cells for Life and the Victoria Angel - Registry of Hope click HERE.
To read about the process of making a donation, click HERE.
The Katelyn Bedard Bone Marrow Association is a non-profit
organization operating in the province of Ontario. We do not receive any government funding
and rely solely on the generosity of private donations.It is thanks to our generous contributors that we are able to offer our Bone Marrow Transplant Family Support Program which provides direct financial support to families dealing with a bone marrow transplant. As of today, the program is a pilot project available to families at Children's Hopsital of Western Ontario in London, Ontario. Our hope is that with successful fundraising we can expand this program and offer it to many more transplant referral centers, both paediatric and adult over time.
We are excited to announce that we can now accept donations online through the PayPal service. Click the button below to make a donation online.
*** Note - The Katelyn Bedard Bone Marrow Association is incorporated as a non-profit organization in the province of Ontario. However, we do not yet have a charity registration number and as such cannot issue a tax receipt at this time.
We officially launched the Katelyn Bedard Bone Marrow Association this past week by
issuing a press release to announce to the public that we have created this
non-profit organization. The Windsor Star published an excellent article about
bone marrow donation and the association we have started. Click
here
to read the article.At KBBMA, we have two central goals:
|
A Year ago Katie earned her Angel Wings... 
If only there was a match for Katie...
Someone is looking for a needle in a haystack.... you might be the needle! We MISS YOU KATIE.
|
 |
|
 |
The Carla Can Sing Walk-a-Thon is a fundraiser for the Barbara Parry Paediatric Oncology Asociation, a wonderful organization that provides support to children
 |
|
 |
at the info table
We had a booth setup in the Children's activity area. For the kids, we ran a game called the "Match Game". Inspired by our slogan, "Someone is looking for a needle in a haystack... you might be the needle', the game challenged children to find matching items in a haystack of sizzle pack (kind of like Easter grass, but made of paper). Players chose a colourful toy from a basket to search for.
While the kids played the "Match Game", our volunteers took the opportunity to say hello to their parents and give them a brochure about bone marrow donation. Over the course of the two days we connected with over 120 people. Hopefully many of these will take the time to learn more about donating bone marrow and choose to join the bone marrow registry.
A very special thank you to the following companies for donating items for our display:
A few months ago we posted a story on this site about Uzoma Azuh from
Windsor, ON. We are saddened to report that Uzoma received bad news
recently that his Leukemia has come back. He needs a bone marrow transplant
immediately. He still has not been able to find a bone marrow donor despite
a tremendous effort by his friends and family to get people onto the
bone marrow registry. If you haven't done so yet, PLEASE join the
registry. Another way to help Uzoma is
to contribute to the Uzoma Azuh Fund. This fund was established to
pay the cost of getting people in Nigeria, where Uzoma's family is from,
tested and added to the bone marrow registry. Please do whatever you can
to help Uzoma, his life is at stake. You can read more about Uzoma on the
Donor Corner web site.
The photo to the right is of Katelyn with her brother Bryan (center) and her cousins Zack and Brayden
(rear / left respectively). The photo was taken at Christmas time a few years ago
when Katie was in the hospital. Zack did something truly amazing last month when he had
a road hockey party for his 9th birthday and invited all of his friends. On the invitation,
he told everyone that he did not want them to bring any presents to his birthday party. Instead,
he told them if they wanted to do something for him, that they could make a donation to the Katelyn
Bedard Bone Marrow Association. None of us at KBBMA knew Zack had done this until we were pleasantly
surprised to see him in attendance when we had our board meeting in May. He told us that he
had something to tell us and we were all in awe when he told us what he had done and with
a big smile on his face told us that he had raised over $500 for KBBMA. Deservedly so, all of
the board members gave Zack a round of applause and thanked him for this generous act.
How amazing that a 9 year old boy would have the maturity to do something so special in memory
of his cousin. A special thank you to all of Zack's friends who came to his party and
made this special donation.But wait, there's more. Zack did something else quite remarkable in memory of Katie. When asked to write a poem for his grade 3 class, Zack wrote this beautiful poem about her.
Everyone misses her
Only 4 years old
Cancer
I feel sadness in my heart
I wish you could come down and play with me
I'll be the king and you be the princess
See her picture and remember
Died in the hospital
I'll see you in heaven
Wow, what a special young man! Thank you so much Zack!
The Katelyn Bedard Bone Marrow Association is thrilled to announce the launch
of our Bone Marrow Transplant Family Support Program. This program will
provide financial support to families that have a family member that is having
a bone marrow transplant.As a newly founded non-profit organization, our available funds are limited. At this time we are only able to offer this program to patients from Children's Hospital of Western Ontario. We have selected CHWO for a pilot launch of the support program because this is the hospital that Katelyn was treated at. Over time, we hope to grow the program to include many other centers, both paediatric and adult.
The reason we started this program is because when someone needs a bone marrow transplant, both he or she and their caregiver (spouse, parent etc.) need to take time off work for many months. Since there are only a handful of transplant centers, this usually means living on the road for the duration. Not only is there no money coming in during this time, but they are faced with increased travel costs, meal costs, parking etc. The stress of this is on top of the stress they are already feeling from dealing with a devastating illness. We hope to raise money that can be used to help these families.
Click here for more information about the program.
To apply for the Bone Marrow Transplant Family Support Program, either contact the social worker at Children's Hospital of Western Ontario or send a message to info@givemarrow.net.
The Katelyn Bedard Bone Marrow Association is funded exclusively by donations. If you would like to make a donation and help us assist families dealing with a bone marrow transplant, please send it to:
Katelyn Bedard Bone Marrow Association
3064 Fairlane Cr
Windsor, ON
N8W 4Y6
We would like to formally introduce the founding board of directors of the Katelyn Bedard Bone Marrow Association:
| Bryan Bedard | President |
| Joanne Bedard | Vice President |
| Melba Bedard | Secretary |
| Nancy Leavoy | Treasurer, Chair - Transplant Family Support Program |
| Jackie Leardi | Chair - Public Relations & Marketing |
| Nicholle Kuzniak | Chair - Web Site |
| Kevin Mayea | Chair - Fundraising |
| Rhonda Mayea | |
| Carolyn Mayea | |
| Paul Hammond | |
| Frances Hammond | |
| Andrea Sulyok | |
| Cherylann Stachow | |
| Mark Ruttle | |
| Ken Roughton | |
In the last update, we posted the first part of the story about Julia, an adorable little girl that was diagnosed with leukemia when she was just 7 months old and needed a bone marrow transplant. The second part of her story has been posted now. Here is an excerpt:
Julia May Krause has recently celebrated her One Year Anniversary since she received her Bone
Marrow Transplant on March 10, 2005. Twenty - three days after Julia's transplant, the transplant was considered
successful. Successful now means hope, more time to enjoy the little things that are not so little.
Having a successful transplant does not mean their journey is completed, it another accomplishment
in her journey to healing.
Read on...Thank you to Charlene and Mike Krause for sharing Julia's Story. It is such an amazing and touching story. There is more strength and courage in little Julia than most adults have. We continue to pray for you! Mike and Charlene maintain a CaringBridge site for Julia where you can read a journal of her progress and check out many cute pictures. Her site is www.caringbridge.org/canada/julia
The layout of our web site has been re-designed. We're really excited about it and hope you like it. Let us know what you think by leaving us a message on our Discussion Board. Some of the new features include:
Here are few more links we came across:
We would like to introduce you to Julia May Krause and honor Julia and her family on Givemarrow.net by telling their story. Please check back for our next article.
Charlene & Mike Krause were given less than 10% odds of conceiving a child. On January 7, 2004,
they were fortunate enough to give birth to a beautiful blonde haired blue-eyed girl - she was the
epitome of healthiness, and the Hospital called her the 'miracle baby'. She was named Julia May Krause.
Their dream of such a perfect and wonderful life had just begun.
Read on...Thank you to Charlene and Mike Krause for sharing Julia's Story. We will be posting another article on Julia shortly. Please come back to read more about Baby Julia. Way to go Julia! We continue to pray for you! Mike and Charlene maintain a CaringBridge site for Julia where you can read a journal of her progress and check out many cute pictures. Her site is www.caringbridge.org/canada/julia
The Windsor-Essex County Health Unit, with the support of DaimlerChrysler Canada and the CAW
published a wellness newsletter in January about the importance of blood and bone marrow donation.
They graciously featured Katie's story in the brochure. You can download a PDF version of the brochure
by clicking here. Feel free to print
this out or to e-mail it to your friends and family. We cannot thank the Windsor-Essex County Health Unit,
DaimlerChrysler Canada and the CAW enough for their support.
We've come across a number of good links the past little while and decided it was time to finally get them onto our site:
Jennifer Lopez has been doing a really good thing lately. She has been doing everything she can to help Janet Ovalles, a 29-year-old of Dominican descent who needs a transplant from a matching donor to survive.
Here is an excerpt from a Washington Post article from Sunday, February 11, 2006:
Actress-singer Jennifer Lopez is using her starpower to rally support for a fellow Latina who
is suffering from blood cancer. Lopez, 36, is urging Hispanics in New York City to donate blood
marrow to help Janet Ovalles, a 29-year-old of Dominican descent who needs a transplant from a matching
donor to survive."I am a young Hispanic woman, so is Janet. I could empathize with her situation so much," Lopez said in a statement released Friday by DKMS, the bone marrow donor center that is organizing donor drives for Ovalles.
"These things just make you realize that we're all interconnected and depend on one another," said Lopez, who is of Puerto Rican descent.
Doctors say that a bone marrow transplant is Ovalles' only chance for recovery and the most suitable matches are from people of the same ethnic background.
But with Hispanics sharply underrepresented in the pool of registered donors, the prognosis is bleak. For Ovalles, there was no match in her family or among the 10 million registered donors worldwide.
Paul Gilbert, a 36-year-old Kingsville man had a bone marrow transplant last December. There is a good article in the Windsor Star today about him. Paul shares how he is not only dealing with the physical pain and fear that comes from Leukemia and its treatment, but how difficult it is for his family financially with him having to be off work for 2 1/2 years.
Here is an excerpt from the article:
He had the transplant Dec. 1 in Hamilton.The procedure was pretty easy, said Gilbert.
"It's like a blood transfusion," he said. "You lie back and let the bone marrow flow through the IV."
One of the hardest things to endure is being jobless, said Gilbert.
Doctors told him he'd likely be off work 21/2 years. "That set me back more than anything," he said. "Money is a big thing. When you're working, there is money coming in. All of sudden, you're off work."
We're really excited to announce that we have added a discussion group to our web site. The hope is that it will grow and become a great place for people to interact on bone marrow transplant related topics. Anyone can read the messages but you will need to create an account to post your own messages (takes less than a minute).
Tom Garrett had a bone marrow transplant a few years ago when he was 15 to treat his Acute Myeloid Leukemia (AML). One of the complications of bone marrow transplants is that patients often develop Graft vs. Host Disease (GVHD). Basically, the new marrow they receive detects their body as being foreign and attacks it. In Tom's case, GVHD is causing a really bad skin rash. To treat his GVHD, Tom needs special treatment by a photopherisis machine. Tom lives in Ontario and unfortunately there isn't a photopherisis machine in Ontario so he had to travel far from home to Calgary. There is a machine in Toronto but it is not in service.
Tom's bone marrow donor, Ron Giles runs a web site about Tom, www.fightfortom.com. There is a petition on the site to ask the Ontario government to put the photopherisis machine into service so that families that need it can stay closer to home.
Here is a message from Ron asking for your help by signing the petition:
The cancer photopheresis machine is approved to be used on GVHD and cutaneous T-cell lymphoma (CTCL) and is being
tested on many things such as AIDS, Crohn's disease and many autoimmune diseases.There are only 3 machines in Canada. One is in Alberta, the other in BC and the 3rd we just found out is in Toronto collecting dust.
When you get a bone marrow transplant as you are probably aware, you have a good chance of getting GVHD and require photopheresis.
The boy that I donated bone marrow to, has developed GVHD and needed the treatments. He had to be sent out to Calgary.
The family has to be separated for about 6 months to a year until his treatments are finished. We discovered that there is a machine in Toronto collecting dust. I have put a online petition on the www.donorcorner.com website and I am encouraging everyone to fill it out.
The young teen is doing amazing with his treatments. The doctors can't believe the progress. He doesn't need his wheelchair and he can extend his arm alot now. He will be off of the steroids very shortly.
A story about the machine appeared in the Toronto Sun on pg 5. January 27,2006
Could you please pass the website on and have people fill out the petition.
Thanks
Ron Giles
www.donorcorner.com
519-991-4919
Rajan is a 7-year-old boy in California that has had a cord blood transplant and is doing well. Rajan was not able to find a donor in the unrelated bone marrow donor registry. Rajan is of Asian-Indian background and this ethnicity is underepresented in the world bone marrow registries.
Here is an excerpt from Rajan's web site, www.hopeforrajan.org about the pressing need for Asian-Indian bone marrow donors:
The subsequent realization that there was not a matched related donor further disheartened us all.
In our search for a matched unrelated donor for Rajan, we have discovered how scarce this potential
is for patients of our ethnicity. Our family is originally from India , and the percentage of
South Asians on the National Marrow Donor Program registry is astoundingly low. This is ultimately
a CRISIS OF GREAT NEED AND LITTLE TIME. There is an undeniable urgency to the situation that
Rajan and other South Asian patients face. With a 1 in 20,000 chance of matching someone within
your race, and the South Asian donor pool percentage being what it currently is, the chances for
patients of Indian, Bangladeshi, and Pakistani descent are clearly not hopeful.But we, as a community, can change this; we can come together as a people and make a substantial difference, for one and for many. We can no longer allow our brothers and sisters, our sons and daughters, our mothers and fathers to fight this battle alone. There is no comprehensible reason that their burden should be as it is; we are certain that this is a problem that stems from a lack of awareness and education, NOT from a lack of generosity, charity, or kindness.
The only way to know if you can help Rajan or any of the many other patients looking for a bone marrow donor is to join the bone marrow registry today.
Uzoma Azuh is a 22-year-old medical student living in Windsor, Ontario. There is only one thing on Uzoma and his family's Christmas list this year, a life saving bone marrow transplant. The trouble is, nobody in the wolrd bone marrow registry is a match for him.
Here is an excerpt from the Windsor Star article about Uzoma that appeared in the December 9, 2005 edition:
It's a simple request that has become elusive after a search through the worldwide registry of 10 million bone marrow donors came up empty. Azuh is appealing to Windsor residents, especially those of African heritage, to volunteer to give a part of themselves to save his life.
"I would like to appeal to the African-Canadian community to come out in full force to give the quintessential gift of life." said Paul Ocheje, a law professor at the University of Windsor and leader in the Windsor African community.
"Unless we are able to find a bone marrow match, there will be a problem for (Azuh)," Ocheje said.
The 22-year-old Riverside high school graduate, who came to Canada with his family as a teenager from Nigeria via Scotland, was first diagnosed with acute monocytic leukemia in late September.
Azuh, an accomplished student and athlete who wrestled and ran track at Riverside, took his second year off from medical school at Wayne State University as he undergoes chemotherapy treatments. Over the next few months he will continue with chemotherapy to keep the cancer at bay until a donor is found.
"I've had to stop my busy life," said Azuh Thursday while wearing a facemask to protect his vulnerable immune system from germs. "I used to sleep three or four hours a night (because I was so busy). I wanted to graduate from medical school at 25 and become a cardiologist by 32. It's been tough."
While Azuh hopes to find a bone marrow donor match for himself, he emphasized he wants to inspire donors to join the registry to aid anyone who is suffering. "It's like playing the lottery," said Azuh, who used to volunteer at the Windsor Regional Cancer Centre. "Anyone could be a match. You just don't know."
In Canada, there are 220,000 people on the bone marrow donor list -- only about 1000 of whom are of black descent -- while 224 patients received unrelated bone marrow transplants last year, said Ron Vezina, spokesman for the Canadian Blood Services.
The only way to know if you can help Uzoma or any of the many other patients looking for a bone marrow donor is to join the bone marrow registry today.
There is an interesting article on Seacoastonline.com encouraging people to consider bone marrow donation. Here is an excerpt:
"There is a need for donors of all races, but the need for minority donors is urgent. Because "tissue type" is inherited like skin and eye color, patients are most likely to find a match from someone of a similar ethnic background. Because individuals with minority ethnic backgrounds comprise only 25 percent of the national registry, patients from minority ethnic backgrounds are less likely than Caucasians to find a matched donor.
Joining the national registry is a simple process and requires only a small blood test, but becoming a volunteer donor is a serious commitment. Those who join the registry are asked to remain committed until their 61st birthday. They are asked to commit to donating to any patient, anywhere in the world, regardless of the patient’s sex, age, race or ethnicity. This pledge can mean the difference between life and death for the patient."
Read the rest of the article here.
US Marine Staff Sgt. Gustavo Aleman Jr., 3rd Recruit Training Battalion administrative chief needs your help. Read about his battle with myelodysplastic syndrome and his search for a bone marrow donor here.
There are alot of stories out there that discourage people from joining the registry. "It hurts" or "It's a very serious procedure, you could be home in bed for a long time". These are just 2 of the many I had heard - prior to making my decision. I had NO reservations considering that there are so many people who need OUR help. If only "I" could be the one to save someones life. Could you only imagine - YOU - could really do that.
Shelley - Windsor, Ont.
A search of the world wide bone marrow registries turned up no matches. We need to change that by getting as many new people into the registry as possible.
The right person is out there, we just need to find them so they can come to her rescue. Maybe it's you! Don't wait. Don't put it off because Amy needs your help now!