March 1, 2020

Welcome to 2020! Another year has passed by very quickly and I would like to update you on some of the Barth Syndrome Foundation of Canada’s (BSFCa) accomplishments in 2019.

One of our main goals is to be able to contribute funds and participate in research being done into causes and potential treatment for Barth syndrome. We have been very fortunate to play a part in the Barth Syndrome Research Grant Program thanks to our loyal donors. The grant recipient we helped partially fund (along with Barth France and Barth Syndrome Foundation, Inc.) in 2019 was Christopher Y. Park, MD, PhD, Associate Professor, New York University School of Medicine, who is researching the Characterization of hematopoietic stem and progenitor cells in Barth syndrome. BSFCa’s contribution towards this $100,000 USD grant was $20,000 USD.

The 2020 grant cycle is currently underway. BSFCa will review the recommendations of the Science and Medical Advisory Board of the Barth Syndrome Foundation, Inc. to decide which grant we would like to participate in this coming year. We have allocated $20,000 USD towards the grant cycle for this year.

Another major goal of BSFCa is to support Canadian families affected by Barth syndrome. To that end, an Outreach was held in May, 2019 to bring individuals, families and friends together for a weekend. This was our biggest Outreach to date. See page 6 for more information. We are planning on another fun day this fall, and will be sending out information as plans are made.

We are excited to announce a new member to our Executive Committee, Jasmine Champagne. Jasmine lives with her husband, Mark, her three-year-old son Caleb who is affected by Barth syndrome, five-year-old son Jordan and two exchange students in B.C. Welcome aboard Jasmine!

Another volunteer who is tirelessly working for us behind the scenes is Paula Sisson. She continues to update our website and produce our newsletter. Thanks for all the hard work Paula!

In May, we said farewell to the first Science Director employed by Barth Syndrome Foundation, Inc., Dr. Matt Toth. Matt was instrumental in finding researchers who are as devoted to finding a treatment/cure as Matt was. We welcome Dr. Erik Lontok as the new Director of Research and wish him success in his new role. Chris Hope and Susan Hone were fortunate to meet Erik at a planning session for the upcoming BSF Scientific, Medical and Family Conference being held in July 2020.

BSFCa has supported the BSF conference for a number of years. This year is a major milestone for the conference as it is the 10th conference and 20 years since a group of parents and individuals with Barth first gathered together. A number of Canadians are volunteering to help make this conference the biggest and best to date. As well, BSFCa will be sponsoring portions of both the scientific and family side of the conference. Hope to see a number of you there.

As always, we are very thankful to our donors and volunteers. Without you, the above events and research could not happen. Thank you for choosing Barth Syndrome Foundation of Canada as one of your charities of choice. You are changing the lives of individuals and families affected by Barth syndrome.

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