2007: The Board of Directors is proud to announce that Heather Norton has been selected as the new President of SDS Canada. Congratulations Heather! Our full 2007 Board is listed later on this page.

A new clinical diagnostic test is now available at The Hospital for Sick Children 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.

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.

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 .

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

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.