President’s Report—Fifteen years of devotion and commitment
by Susan Hone

It is that time again when we take a moment to sit back and reflect on events and proceedings throughout the past year — what worked, what could be improved upon, and where to go from here.
This November 20th we celebrate Barth Syndrome Foundation of Canada’s (BSFCa) 15th Anniversary. This is quite an achievement. While it is relatively easy to start a foundation, keeping it going requires people with passion, persistence and dedication. So many people have given of (England). Photo by Chris Hone themselves to help us reach this point. Everyone involved with this organization is a volunteer, and without them we would be lost. We truly appreciate not only financial donors, but also donations of time.

The biggest event this year, of course, was the 2018 Scientific, Medical and Family Conference, both for individuals, families, and the Foundation. While members of Barth Syndrome Foundation of Canada support the conference individually as volunteers or sponsors, we also contribute as a proud affiliate. It is one of the most important programs that we invest in financially. We sponsored the Photo Booth at the Friday night social which is always a big hit with families, the Poster Session (during which researchers interact with each other and subsequently with families to discuss their investigational outcomes and future ideas), and a luncheon for both the families and professional attendees. In addition to the sponsorship contributions, we also provided flight and hotel accommodations for two Canadian researchers to attend.

The conference provides families with valuable information from other conference attendees, doctors and scientists. It is a one stop shop on Barth syndrome. Over seven days, the conference includes new family orientations, a Barth essential information session, sessions on neutropenia, cardiac aspects of Barth syndrome, genetics, carrier support, techniques for daily living by age groups, research clinics to collect data from those with Barth syndrome as well as control subjects (brothers, physicians and scientists’ sons) and scientists and physicians meeting to discuss their findings and compare notes along with various other meetings. My family has been fortunate enough to attend many of these conferences and the friends we have met have become our extended family. It is truly an opportunity every family living with someone affected by Barth syndrome should strive to attend.

The other major contribution BSFCa makes is toward the annual grant process sponsored by Barth Syndrome Foundation Inc. In 2017 we contributed $25,000.00 US Dollars (USD) towards Christina Pacak, PhD, Assistant Professor University of Florida, Gainesville, Florida’s study entitled “Optimization of AAV-mediated gene therapy for Barth syndrome”. This year we allotted $10,000 USD to award Richard Epand, PhD, Professor Biochemistry and Biomedical Sciences, McMaster University, Hamilton, ON on “the cause and consequences of plasmalogen depletion in Barth syndrome”.

On the home front, we have started to go through some changes in our board. In June, at the annual general meeting, one of our founding members, Christiane Hope, elected to step down from the Board of Directors. She remains heavily involved in the Foundation and is completely committed and dedicated to our mission and goal. Thank you, Chris, for your long-term service on the Board.

While board turnover and changes are daunting, the BSFCa is a strong organization, and we know that these changes can be rewarding. In order to not just survive but to flourish, it is important for this affiliate to anticipate change and look to adapt and tackle all challenges head on. We hope to recruit a talented new board member (or two) and with their ideas and dedication we feel that we will be able to move forward and increase our efforts in all areas.

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