Relections from the President
by Lynn Elwood

Whenever I sit down to do one of these semi-annual reports, I am reminded just how much work gets done by this organization. We are very lucky to have such a dedicated and efficient group of volunteers working on behalf of all individuals affected by Barth syndrome. We cannot thank them enough for all their hard work.

In our last newsletter, we mentioned that we were having a Needs Assessment done in order to have an impartial view of the true needs of our men and boys affected by Barth syndrome. We have been very fortunate to have BJ Develle, MSW work with affected individuals and their families. Since we were so anxious to have the complete report, we asked BJ to join us at our Annual General Meeting and family outreach session in April, 2011. Thankfully, he made the trip up to the cold north, shared time with the group and was able to complete his report.

The Annual General Meeting itself went well and an afternoon of bowling was a re-sounding success. The Barth affected boys and men thanked us for listening to their requests and asked that we do something similar for future outreach sessions.

This type of request is an example of the information we discovered from the Needs Assessment. We believe several findings apply to the larger Barth population and we will share a summary of these results with the International organization. For the areas that are specific to our population, we are acting on delivering them through our programs. We really have shifted our focus as an organization to the new mission “ Enhancing the lives and outcomes of Canadian individuals and families affected by Barth” and our members have been vocal in their appreciation.

Other gatherings over the last six months included our annual golf tournament. This year, we were at a new venue and were fortunate to have four young men with Barth syndrome and some of our Barth friends from the US join us for the day. As you will see from the article later in this edition, the day was a resounding success in awareness, outreach and also in raising much needed funds.

The most recent outreach took place in Eastern Canada. Two of our board members and one affected young man travelled to Halifax to meet with doctors, researchers and one of our young men, Lyem, and his family. This session has been one of our strongest awareness events this year and is a powerful example of our Barth men taking part in significant ways within the organization.

A few weeks ago, Lindsay Graff joined BSF, Inc. as its new Executive Director. Lindsay is based in Philadelphia and has strong experience in being both an advocate for her own child with a rare condition and in leading organizations such as ours. One of her first acts was to reach out to the International organizations and learn more about what we do and where we focus. We welcome Lindsay and look forward to working closely with her in our shared global Barth syndrome goals.

Of course, our continued financial health is critical to the delivery of our programs. As you will see from the financial summary in the newsletter, we continue to be in a strong financial position. The conservative budgeting and the close watch on expenditures by the board and executive have been key to this success. Of course, the contributions of all of our Friends of Barth, through donations and participation in fundraisers make this success possible. Thank you to all of you for your continued support, in whatever form that takes.

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