Ten Years in the Making
by Lynn Elwood & Chris Hope

At times, it is hard to believe that the Barth Syndrome Foundation of Canada (BSFCa) has been operating for ten years. Knowing that it would not be an easy job, several Canadian families joined together during the 2002 Barth Syndrome International conference and decided to form a Canadian affiliate. We learned a considerable amount during those first few years as we worked through incorporating the business, ensuring governance was in place and achieving our charitable status. We worked closely with the US BSF group and set up programs focused on awareness, family services, science & medicine and charitable support as well as fundraising.

In the early years, much of our efforts went toward raising awareness within Canada. We created material that explained Barth syndrome and shared it broadly. We attended conferences, contacted hospitals, did outreach to key types of physicians and shared information on Barth syndrome and the organization with everyone we could reach. The result of this continuing program is a strong and growing set of physicians and researchers, families and friends that are aware of and support Barth syndrome research, affected individuals and the organization in countless ways.

Fundraising has been very important throughout our 10 years and grows in significance as we strive to expand our programs to provide more family services, further research and support for affected individuals. We started with projects like letter appeals, selling poinsettias and collecting change. Soon, it became clear that if we could raise more funds we could expand our efforts. We held our first golf tournament in 2005 and have raised over $150,000 to date in this annual event. Throughout our history, grassroots fundraising has played a key role, bringing both funds and awareness with activities like sales, draws, parties and events put together by families, friends and volunteers.

Our Science & Medicine program has been a goal from the beginning and really grew when we started to fund research grants in 2007. We participate in the BSF grant process which utilizes the International Scientific and Medical Advisory Board, Science Director and several outside researchers who review and prioritize grants from around the world that further research into all aspects of Barth syndrome. We have contributed over $220,000 in funding to eight research grants from Canadian and International researchers. This is a very exciting aspect of the work that we do, as research has greatly increased the worldwide understanding of the disorder and allowed us to get closer to recommended treatment options.

Throughout our ten years, there has been a program that directly focuses on families and individuals affected by Barth syndrome. Through this program, we work directly to educate and support families and to help individuals affected by the condition. This support has involved everything from being at the end of the phone or mail to help with concerns; providing educational material; advocating within the healthcare system; and bringing families together so that they can share experiences, fun and laughter. As we closed our fifth year, we spent time reviewing the organization and our path forward. At that juncture, we agreed to refocus the organization with a mission that more tightly focuses on the Canadian individuals and the things they need to have for better short and long term outcomes. We did a needs assessment with the affected individuals and have changed our programs and mission to more closely respond to their needs.

Our revised mission is:

Enhancing the lives and outcomes of Canadian individuals and families affected by Barth syndrome.

We are grateful for the many hours put in by our growing set of volunteers. We remain a completely volunteer organization and none of what we do could be accomplished without the countless hours from so many devoted people. We now have a program that focuses on finding, engaging and sharing information with volunteers. Working with this amazing group of people has become one of the most rewarding parts of the organization.

It is with a great deal of satisfaction that we are able to look at the boys who have become young men in the past ten years. When we started, the ages of the individuals we work for ranged mainly from six years old to the early teens. We now have several men in their late teens and upward who play a vital role in helping to raise awareness and in informing us of their needs.

As we close our first 10 years and look towards the next decade, we realize that we have learned, grown and accomplished a great deal. We welcome input and ideas to help us grow to the next level and sustain the organization in the spirit it has enjoyed during our first decade. Thank you to all of you for your part in this amazing group. We are making a difference in the lives of Canadians and others around the world who are in some way affected by Barth syndrome .

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