President’s Report
by Susan Hone

Happy Fall everyone. This is my first newsletter report as President of the Barth Syndrome Foundation of Canada (BSFCa).

2015 has been a year of significant change for BSFCa. The two major changes were to the Board of Directors (see article on Board changes pg. 3) and a new direction in our fundraising efforts, which meant after 10 years, no more golf tournament.

A new initiative, that was well received, was calling our donors in 2014 to simply say thank you for their contributions to BSFCa. Lois Galbraith and Les Morris undertook to make all the calls. We have decided to continue this practice in 2015 with Lois and Les volunteering to make the calls again.

We once again committed to partially funding a new research grant entitled “Mechanism and role of cardiolipin oxidation and hydrolysis in Barth syndrome”. This three year grant is being conducted by Valerian Kagan, PhD, Professor and Vice-Chairman of the University of Pittsburgh. Funding these grants bring us nearer to our goal of finding a treatment or cure for Barth syndrome.

We also welcomed a new affiliate to the Barth syndrome family, the Associazione Barth Italia. It is exciting to have another affiliate, as it shows that Barth syndrome is becoming more recognized and diagnosed around the world.

The 8th International Barth Syndrome Scientific, Medical and Family Conference will be held in July 2016. Lois has again volunteered to head the Registration & Logistics committee and Chris and I are working with Shelley Bowen to plan the Family Sessions/Clinics/Consultations.

Our annual planning session is scheduled for the last weekend of November. It is during this weekend that the executive comes together to reflect on the year and establish the goals for the upcoming year.

On a personal note, 2015 has been a year of change for our family and our journey living with a son who has Barth syndrome. Unfortunately, Jared had to be hospitalized at the beginning of the year for a month due to pneumonia and its complications which lead to having a gastric tube placed. Jared, along with his family, are having their struggles dealing with this new way of him receiving nutrition. By belonging to the BSFCa and its partners, it enabled us to reach out to other families who have gone through similar experiences for advice and support. Support that we would never have without the existence of BSFCa!

Thank you to everyone who donates or volunteers to BSFCa, we couldn’t do it without you!

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