President’s Report
by Susan Hone
It seems like it was a long time ago but in reality, it has only been four months since my family was fortunate enough to attend the 8th Barth Syndrome International Scientific, Medical and Family Conference in Florida. Every time I attend a conference I am in awe of what this group of families, scientists, doctors, therapists and others in the medical field have managed to accomplish in such a short time. I never dreamed that we would ever be looking at more than one possible treatment at a time. I also never imagined the magnitude of scientists, doctors, therapists and others from around the world who have become dedicated to the Barth syndrome dream. Thank you to all who are now a part of my world-wide Barth family.
While at the conference this summer, we had a meeting of the boards of the Barth Syndrome Foundation and its four affiliates. This was the first time all the boards met together and it was so nice to have everyone in one meeting sharing their ideas and accomplishments. Hopefully, we will be able to have more of these meetings at future conferences.
With our fund-raising efforts, BSFCa was able to contribute to the conference by sponsoring the photo booth, poster session, a breakfast and three Canadian physicians/researcher’s flights and accommodations. One of these recipients, Dr. Robin Duncan, Assistant Professor, University of Waterloo, Waterloo, Ontario was awarded a grant partially funded by BSFCa entitled A new enzyme and pathway in cardiolipin synthesis.
We also sponsored $1,000 to The Biophysical Society of Canada’s conference in June. This was the first medical conference in Canada, which we are aware of, where Barth syndrome was on the agenda. Dr. Richard Epand chaired a session related to Barth Syndrome/Cardiolipin and Mitochondria. Among the speakers were doctors Michael Schlame, Valerian Kagan, Grant Hatch, Miriam Greenberg and Stephen Claypool.
On the home front, we had a family activity in September along with our annual planning meeting. We have a volunteer scouring the internet looking for grants we can apply for to raise funds. We will again be participating in Giving Tuesday as we had great success raising funds during last year’s event. Although we have no major fundraising event planned for the near future, we are hopeful that with personal fundraisers, the annual mail appeal and Giving Tuesday we will be able to raise enough funds to continue funding research.
I would like to encourage families to periodically check our website and/or Facebook page for information on upcoming research/studies they can participate in. Without the participation of individuals with Barth syndrome and their families this research can not proceed to the next level. This is an exciting time for BSF and its affiliates, with clinical trials expected to begin sometime in 2017.With everyone’s dedication I am confident we will find a treatment within the next few years.
