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 Barth families have been able to connect virtually throughout the pandemic. The Barth Syndrome Foundation (BSF) has hosted numerous events including monthly zoom calls (some with guest speakers), a virtual Science and Medicine Symposium in 2020, zoom meetings for affected individuals and sibling get togethers to name a few.

Barth Syndrome Foundation of Canada (BSFCa) welcomed a new family to our Barth family in 2020. Read about their Barth journey in this edition.

Research is a priority in trying to find a treatment or cure for Barth syndrome. BSFCa participated in the 2020 and 2021 BSF Research Grant Program. In both years we provided funds in partnership with Barth Syndrome UK. The grant in 2020 was awarded to Robin E. Duncan, PhD, Associate Professor, University of Waterloo, Waterloo, ON, Canada. The title of her research is the Investigation of a new nutraceutical for treatment of Barth Syndrome. The 2021 recipient was Jason Moffat, PhD, Professor, University of Toronto, Toronto, ON, Canada. His research is on Surveying TAZ genetic interactions and mutational landscape in human cells. For more information, please visit our website.

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