SDS Canada at the SDS Congress in Italy

Apr 13

SDS Canada

SDS Canada is proud to support, sponsor and attend the upcoming International Congress on Shwachman-Diamond Syndrome in Verona, Italy. Two delegates from our board of directors will be attending the congress April 17–20, 2016.

We look forward to learning about new research and treatment from medical professionals across the world. We will also be spending time networking and meeting with other foundation leaders from many countries in order to work together to advance research, treatment and support for all families affected by SDS.

We are also proud to say that a good number of Canadian doctors and researchers will be attending the meeting and presenting their research.

SDS_Canada

SDS Canada in Italy

Stay tuned to our Facebook page, https://www.facebook.com/shwachmandiamondcanada for pictures and updates from the congress!

For more information on the 8th International Congress on Shwachman-Diamond Syndrome – Verona please visit http://sdsveronacongress.cittaffari.eu

 

Special Tribute to David Smyth

Sep 07

David was so special in life and continues to touch us all. Please see the link for the David Smyth Fellowship Award that was awarded in Montreal.

http://www.insidehalton.com/news-story/5651831-research-award-continues-legacy-of-oakville-s-david-smyth/

The legacy of Oakville resident David Smyth lived on with an award given out in his name, earlier this month (May), to promote research in the blood and marrow transplant field.

Smyth passed away on Sept. 3, 2010 at the age of 20 following a battle with leukemia, but not before raising awareness about the importance of registering as a bone marrow donor.

His efforts convinced hundreds of people to register as potential bone marrow donors before his death with hundreds more signing up in his memory.

In recognition of Smyth’s work, the Canadian Blood and Marrow Transplant Group (CBMTG) created the David Smyth Fellowship in April 2012.

The annual award provides a maximum of $10,000 to eligible individuals to undertake research on topics that will have a relevance to blood and marrow transplantation.

This year, the grant went to Nurse Samantha Mayo during the CBMTG 2015 Annual Conference, which took place in Montreal on May 15.

Mayo, who is a post-doctoral fellow at the Princess Margaret Cancer Centre in Toronto, is researching the side effects of stem cell transplantation.

Stem cells are essentially blank cells that can develop into healthy bone marrow once the diseased bone marrow is removed.

“I am very honoured to have received the David Smyth Fellowship,” said Mayo in an email.

“Grants such as these are essential for supporting researchers in pursuing innovative ideas that will contribute to the quality of life of patients treated with stem cell transplantation.”

Mayo noted following stem cell transplantation, some patients experience memory and concentration issues.

“These deficits can impact patients’ everyday functioning and quality of life after completion of treatment. Unfortunately, treatment options for patients with persistent deficits are limited,” said Mayo.

“The funding from the fellowship will be used to conduct a small feasibility study of a brain training program among patients treated for stem cell transplantation. I will test whether it is feasible for patients to complete the program as well as explore how this program affects patients’ cognitive functioning.”

The results of this study will be used to inform the development of larger studies of ways to treat cognitive issues following cancer treatment.

Smyth’s parents, Michael and Kim, said they are deeply comforted by the fact a grant baring their son’s name continues to fund groundbreaking research.

The Oakville parents journeyed to Montreal where they participated in the award ceremony.

“It was really very nice and when Kim and I were there, they treated us like a princess and a prince for coming there and trying to help in some way even though we’ve lost our son,” said Michael.

“It was very special because some of these doctors did the first (bone marrow) transplants and they are still working on it,” said Kim.

“One of the doctors I am very fond of is from Vancouver Children’s Hospital and his goal is to make these transplants safe. If this was achieved, maybe David could have had a transplant before he became terminal.”

The couple said there has been some progress in the area of bone marrow transplants since Smyth’s death with some hospitals in Canada are now harvesting umbilical cords for their stem cells.

That said, the national bone marrow registry remains small with approximately 317,000 potential donors listed on it.

Canada’s bone marrow registry is so small, Michael said, Canadians in need rarely find a match and must rely on international registries.

The number of people needing a bone marrow transplant in Canada has grown from 800 in 2010 to about 1,000 today.

CBMTG describes itself as a member-led, national, multidisciplinary organization, which provides strategic leadership that results in excellence in clinical care, research and education within the Canadian blood and marrow transplant field. For more information visit www.cbmtg.org.

You Can Make A Difference!

With the help of generous donors and sponsors, SDS Canada aims to fund ground-breaking research to help all individuals living with SDS. With you, we CAN conquer this disease! Your gift can be a one-time donation, a gift in memory or in honor of a loved one, a monthly donation or as a gift in your will.

Please click here to access our donation page

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Register a SDS patient.

Registering with SDS Canada gives us a way to reach out and stay connected with patients and families living with SDS. We send out regular newsletters with information about family events, our fundraising efforts and the latest in SDS research.

Recent Facebook Posts

Are you or a family member interested in getting involved with SDS Canada? We are always looking for volunteers for special projects and for the board of directors. Message me for details! Meetings are by conference call so you can participate from anywhere! Êtes-vous intéressé à vous impliquer avec SDS Canada? On est toujours à la recherche de bénévoles pour des projets spéciaux et pour le conseil d’administration. Les reunions sont tenus par appel conférence, donc vous pouvez participer..

4 likes, 1 comments1 month ago

Timeline Photos

Beautiful Saturday in Mississauga for SDS Canada’s AGM!

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Photos from Shwachman-Diamond Syndrome Canada's post

Journée familiale SDS à Montréal ce samedi! Communiquez avec nous aujourd’hui pour vous inscrire!

4 likes, 1 comments8 months ago