November 4, 2024
Happy Fall everyone! I am starting off this update with what was the highlight of my summer. After six long years our Global Barth family was able to reconnect at the Biennial International Scientific, Medical & Family Conference in Florida in July! I was so excited to see old friends and was introduced to a number of new families who have joined our group over the past six years.
We had a record number of individuals affected by Barth syndrome attend this year and it is both amazing and sad to see how our group has grown. Canada was well represented at the conference by seven families, researchers, students, and doctors who attended. BSFCa provided financial assistance for five individuals affected by Barth syndrome and one researcher to attend the conference thanks to our generous donors. We also had a dinner one night for the Canadian families at the conference which was funded by an anonymous donor. The dinner was a nice added bonus to the conference, and we would like to express our gratitude to the donor.
One of the highlights for the Canadians was a Researcher from Dr. Robin Duncan’s lab at the University of Waterloo, John Zewen Chan, won the prize for the best poster at the poster session. There were 38 posters on display and Mr. Chan’s submission on the Effects of Compound X on Tafazzin-Deficient B-Lymphoblast Growth and Mitochondrial Parameters was chosen as the winner. Congratulations John!
At the conference, I attended a meeting with other members of BSFCa along with the leads of the other Barth syndrome affiliates and the Chair and Executive Director of the Barth Syndrome Foundation. We discussed ways in which we could support each other, share ideas, and plan for the future of the organizations.
I am excited to announce the addition of Laurel Pridgen to our Executive Committee. Laurel has two sons affected by Barth syndrome. Welcome aboard Laurel!
