Tuesday May 31st, 2011
The David Smyth
Memorial Golf Tournament in support of SDS
Canada
This is is a very special year for our annual golf tournament as we pay tribute to the young man who was the reason SDS Canada was formed in 1997. David passed away on September 3, 2010 at the age of 20 after an intense summer struggling against the rapid advance of acute myelogenous leukemia resulting from his SDS vulnerability.
This year the Tournament will be held on Tuesday May 31st, 2011 at the Carlisle Golf & Country Club
For more information, please see the invitation document.
To register please fill out the registration form then fax or email it to us at SDS.
To become a sponsor, please see the Sponsorship form.
June 2010
Marrow Failure and
Myelodysplasia Symposium
The next Marrow Failure and Myelodysplasia Symposium has been scheduled for Saturday, April 9th 2011. It will be held the Hospital For Sick Children, 555 University Ave., Toronto in the Hollywood Theatre (Main Auditorium) located on the 1st Floor. Information to register and agenda will be posted as soon as it becomes available. The date has been confirmed and location.
June 2010
Letter from Yigal
Dror
Dear Heather and Mike,
I had a great time at the dinner and I congratualate you for the successful turnout. I would appreciate if you consider the following:
Since the establishment of the Canadian Inherited Marrow Failure Registry in 2001, we have enrolled 36 patients with SDS. Although we consider this number is an enormous success for such a rare disease and for a prospective study, we feel we can do better. One of the ways to increase participation and have long-term follow-up is to capture adult patients or other families that approach us directly. We have now the SickKids Ethics approval for sending questionnaires to patients who request to participate in the study. Therefore, I would appreciate if you can notify the patients and families with whom you have contact about this opportunity. If they want to participate they can e-mail the registry office at cimf.registry@sickkids.ca and we will send them infromation about the study, consent forms and questionnaires to fill out. I also attached a short summary, which I would be most appreciate if you can add to your website and newsletter.
Thank you in advance, Yigal
Contact the CIMF at cimf.registry@sickkids.ca
May 2010
12th Annual SDS Golf Tournament
On Tuesday May 20th, golfers came together at the Carlisle Golf and Country Club to enjoy a round and to help raise $34,991.19 for Swachman Diamond Syndrome Canada! Thank you all of our sponsors who have helped us so much.
May 2010
12th Annual SDS Golf Tournament
Help us raise research funds for The Hospital for Sick Children to support kids with Shwachman Diamond Syndrome.
- Date: Thursday May 20, 2010
- Time: 18 Holes 1:00 PM Start
- Location: Carlisle Golf & Country Club
- Format: Scramble (18 holes)
Fill out the registration form and fax it to K. Symons at 905-891-3422 .
For more information contact Kathy @ 905-891-0256
Dec 2009
Marrow Failure and Myelodysplasia Program Website
The Marrow Failure and Myelodysplasia Program has launched their website at http://www.sickkids.ca/mfmp. The Program's mission is to promote clinical care, research and education. They aim to treat all patients with these conditions from the Toronto Greater Area, but we are also happy to receive referrals for consultations from any other sites in Canada or Abroad.
June 2009
International Congress on Shwachman-Diamond Syndrome, Amsterdam, June 19-20 2009
The 5th International Congress is a biannual scientific meeting on Shwachman-Diamond Syndrome. This venue will continue to provide a unique opportunity for clinicians and researchers, as well for representatives from patient organisations, from around the world to meet.
At this meeting we will make things happen! See the announcements that will follow and the preliminary program. When required, arrangements may be offered to have groups of patient families and clinicians discuss current issues on an International SDS Registry and a manifest on the Guidelines for SDS (diagnosis and treatment.
http://shwachmancongress.infoMay 2009
11th Annual SDS Golf Tournament
On Tuesday May 26th 78 golfers came out and participated in the 11th Annual Golf Tournament. With everyone's help we were able to raise $22,000. Shwachman-Diamond Syndrome Canada would like to thank the all of the golfers and sponsors for being there for us year after year.
April 2009
North American Shwachman-Diamond Syndrome Registry
The North American Shwachman-Diamond Registry is now accepting enrollments.
The pamphlet for the SDS Registry can be found here.
SDS Registry website is located here. Their website may not yet be avaiable but they hope to have it up soon.
Become part of the SDS Registry by contacting Melissa Alvendia(malvendi@fhcrc.org)
2007
New President of Board of Directors
The Board of Directors is proud to announce that Heather Norton has been selected as the new President of SDS Canada. Congratulations Heather!
2007
Clincal Diagnostic Test for SDS available
A new clinical diagnostic test
is now available at The Hospital for Sick
Children in Toronto
June 2003
2003 International Scientific Congress held in Toronto
Physicians and scientists from Europe, Australia, the United States, South America and from across Canada attended the 2nd International Scientific Congress on Shwachman Diamond Syndrome. The Congress was held on June 16th and 17th 2003 in Toronto. During 2 days of scientific discussions, the top researchers and clinicians in the world discussed a variety of topics relating to SDS.
The congress was hosted by the Department of Paediatrics at the University of Toronto. The scientific scope of the Congress was significant and involved considerable effort from Congress organizers led by Drs. Peter Durie, Melvin Freedman and RN Lynda Ellis. The Scientific program was developed by the Scientific Committee: Drs.Yigal Dror, Michael Glogauer, Elizabeth Kerr and Johanna Rommens.
SDS Canada President Karen Campbell and Board Member Greg Symons assisted in the planning and fundraising for the event by gathering pledged support from SDS support groups as well as assisting in crafting a very successful sponsorship program that enlisted significant sponsorship from the pharmaceutical community. In all approximately $90,000 was raised to underwrite the cost of this important scientific gathering.
Timed to co-incide with the congress, members of SDS support groups from around the world met in Toronto simultaneously holding a Shwachman Diamond United business meeting.
This congress was a follow-up to the successful 1st International Scientific meeting held in Verona, Italy in 2001. The next Congress wil be held at Robinson College, Cambridge University in the United Kingdom on June 26th - 29th 2005.
June 2003
Shwachman Diamond United: status and next steps as of June 2003
Shwachman-Diamond United is an association linking SDS foundations from all over the globe. We are building a globally-united network of foundations and support organizations, each working on their own national priorities as well as seeking to communicate easily with each other on all key issues to ensure the best use of resources.
Representatives of SDS-Canada, SDSI, SDS-UK, SDS-Australia, AISS-Italy, and SDS-Netherlands began meeting by regular email communications and quarterly conference calls in mid-2001 and momentum continues to grow. An SDU business meeting was held in parallel to the scientific conference in Toronto in 2003.
The concept of Shwachman-Diamond United (SDU) began at the Verona scientific congress in 2001. There were many foundations represented in Verona and these representatives recognized that all foundations were working hard to raise funds for research, write publications and support their members. However, there was not a framework for regular multi-lateral communication among the groups. Thus, the decision to form SDU as an "umbrella" association that linked all of our organizations in a union of equal partners allowing us to share the products of each other's progress so that our valuable time and resources are used most efficiently.
At the scientific congress in Toronto in 2003, we reached agreement on several operating principles and priorities. This is an important development for the SDS cause globally as we strive to help each other in our mutual goal- to improve the quality of life for individuals affected by SDS.
December 2002
Discovery of the SDS-Gene !!!
(scientific breakthrough published December
2002)
Researchers at The Hospital for Sick Children (HSC) and the University of Toronto (U of T) have discovered mutations that cause SDS in a gene on chromosome 7. Their findings were released in a press release on December 23, 2002 after publication in the journal Nature Genetics.
The laboratory responsible for the discovery of the SDS-gene is headed by Dr. Johanna Rommens and Dr. Peter Durie. The lead author on the paper in Nature Genetics was Dr. Rommens’ graduate student Graeme Boocock and other co-authors were Jodi Morrison, Maja Popovic, Nicole Richards, and Lynda Ellis.
The financial support of SDS-Canada and the other SDS Foundations around the world was essential to this breakthrough as was the provision of blood samples by SDS families from around the world.
The discovery of the gene will lead to improved diagnosis of SDS . The next stage in the research is for scientists to determine what goes wrong at the molecular level. They will investigate how an error in this gene actually leads to SDS. In turn, this will lead to the development of new therapies.
For further details regarding this discovery, please see the HSC press release and the HSC-prepared document Answers to Frequently Asked Questions .
December 2002
Research Committee Report- December 2002
This was the third year in which SDS Canada has awarded grants through a formal peer-review process. This involves a system comparable to that used by many scientific funding agencies. The use of "external peer-reviewers" is fundamental to the process. All applications to the SDS-Canada Grants Competition are sent out to experts who have no affiliation with the applicants and no affiliation with SDS-Canada. The external reviewers' reports and the grant applications are then reviewed by the SDS-Canada Research Committee (composed of two university-based researchers) which makes a final recommendation to the Shwachman-Diamond Syndrome-Canada Board for funding approval.
In 2000, two grants of total value $60,676 were awarded following successful peer review - Dr. Johanna Rommens and Dr. Melvin Freedman received a grant for research to determine which genes play a role in the deficiencies in the bone marrow stroma of SDS patients and Dr. Peter Durie and his colleagues received a grant for their study on acinar cell function in the parotid (saliva) gland in SDS patients.
Following successful peer review in 2001, a grant for $79,200 was awarded to Dr. Yigal Dror at The Hospital for Sick Children in Toronto for a project titled "Abnormal Cellular Processes Causing Premature Cell Death (Apoptosis) of Marrow Cells of Patients with Shwachman Diamond Syndrome: Implications for Bone Marrow Failure."
The 2002 grant competition has just concluded. We have awarded three grants totaling $80,220 as follows: Drs. M. Glogauer (Dentistry, University of Toronto) and Y. Dror (Haematology/Oncology, HSC) have been awarded a $30,000 "Griffiths-McBurney&Partners Research Grant" to support a project titled "Oral Disease Prevalence and Quality of Life in Patients with SDS". Drs. Glogauer and Dror have been awarded a $27,000 grant for a project titled "Relationship of Oral Disease and Oral Neutrophil Function in Patients with SDS". Drs. M. Freedman (Haematology/Oncology, HSC), E. Leung and Y. Dror have been awarded $23,220 for a project titled "Angiogenesis in Shwachman-Diamond Syndrome Bone Marrow Stroma: The Interplay Between Angiogenic Characteristics, Apoptosis and Leukemogenic Potential."
The SDS-Canada Research Committee would like to take this opportunity to congratulate all grant recipients and to say "Thank you" to the researchers who are making major inroads into understanding and treating SDS. Thank you also to the donors who make this possible.
December 2002
Fundraising Committee Report - December 2002
Well, its been another great year of fund raising with over $60,000 arriving to date, on the heels of 2001's $92,000. We still need more to reach our $75,000 target and continue to fund the key research being done at Toronto's Sick Children hospital and University of Toronto. So please support us again 2003!
We are most happy with our biggest success as we received $30,000 in September from a new Shwachman friend in Griffiths McBurney & Partners (GMP), a leading Toronto based Investment firm.
Our 4th annual golf tournament in May brought out 140 golfers from across Ontario and turned out to be another success generating over $20,000. A big thank you goes out again to HenryWaszczuk, our MC and head of key sponsor Fins & Skins. Thanks also to RBC Investments for their contribution of $5,000, and last but not least, Wrangler Canada for their kind clothing and product donations and 6th year of support.
Our Weigh-In Fraternity fishing friends
again had a wonderful bass fishing year and
contributed $2,000. They were also able to get
their employer Bank of Montreal to contribute
another $3,000. Great going guys! In case any
of you see the Shwachman Diamond Syndrome
Canada logo, the smiling boy's face, on a boat
as you travel across the 401, you'll know
you're passing a Weigh-In fishing fraternity
brother.
CIBC World Markets, as part of their annual "commission" drive to support Canadian Children's charities directed $2,500 of their take to us. We have been fortunate to have received a donation from CIBC almost every year since SDS Canada's inception in 1998.
In the fall of 2001, we held a very successful and fun filled "Blue Jeans and Black Tie" gala. With Henry doing a great job "Mcing" we were able to net over $30,000, a great night for all. Thanks to TD Securities, RBC investments & Wrangler Canada for their platinum level sponsorship. We plan another gala for October 2003.
After the hockey season ended in April, the Oakville Rangers Novice rep team got back on the ice and performed a skate-a-thon raising over $4,000 for SDS. We appreciate the support of Oakville's minor hockey system very much.
For 2003 plans are to raise $75,000 again, focusing on continued success at our fifth annual golf tournament in May, our formal Gala fundraiser, and our winter direct mailing campaign. Watch our "fundraising" page for details about our upcoming events.
Thanks to all donors and SDS Canada workers for making this success happen.