June 11, 2026
Welcome Spring!
I would like to update you on a few of the things Barth Syndrome Foundation of Canada have been participating in since the last newsletter.
In August of last year, we combined our annual planning meeting and family outreach into one weekend. Families gathered at a cabin in Northern Alberta on Friday afternoon. On Saturday, the Board and Executive reviewed our previous year, created the budget and brainstormed on program goals for 2026 which include:
- Support for affected individuals and Canadian researchers to attend the July international conference
- New family and information resource support
- A possible Family Outreach meeting in Ontario
- Increased research grant funding
- Continued fundraising, hopefully including some personal fundraisers
A recent research grant that BSF Canada is partially funding is showing some exciting possibilities. Canadian researcher Dr. Jason Moffat along with Dr. Blomen from the Netherlands have separately discovered that “turning off” a gene called ABHD18 may actually prevent Barth syndrome symptoms. The goal of the current research is to evaluate a class of drugs that may effectively block or “turn off” ADHD18 as a potential therapy for Barth syndrome. Dr. Moffat will speak at the Barth Syndrome Conference in July to discuss this research.
The drug Elamipretide now marketed as Forzinity, manufactured by Stealth BioTherapeutics, was conditionally approved on September 19, 2025, by the United States Federal Drug Agency. This is a major achievement in the pursuit of a treatment for Barth syndrome. As part of the conditional approval, more clinical studies will be done worldwide on Forzinity over the next two years. Canada will hopefully have a site or two chosen to participate in the clinical trials.
Our Annual General Meeting was held on May 21, with elections of our Board of Directors for terms of two years. Our current Board of Directors is:
Susan Hone President
Lynn Elwood Board Member
Marilyn Pridgen Board Member
Christiane Hope Board Member, Treasurer
Laurel Pridgen Board Member
Jasmine Champagne has retired from the board. She has been a strong voice, an enthusiastic volunteer supporter and will be missed. We wish Jasmine all the best and welcome the new and returning members of the board.
To all our families, friends and supporters, I thank you and wish you all the best. Enjoy the upcoming warm weather.
