Newsletters

November 3, 2022 I hope this newsletter finds everyone well and getting back to their previous lifestyles before the global pandemic. Although the pandemic is not yet over, the world is adjusting to living with it and the fear is not as heightened as it was last year at this time. We still need to be cautious as Barth syndrome can cause individuals

November 1, 2021 As 2021 quickly comes to an end, I am ready to see if 2022 will bring us some relief from this global pandemic. Living with someone affected with Barth syndrome, who can be immune compromised at times, has definitely put me on high alert for almost two years. Although we have not been able to get together in person, our

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

President’s Report—Fifteen years of devotion and commitmentby 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

President’s Reportby 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

President’s Reportby 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