Newsletters2021-10-24T02:09:44+00:00

Newsletters

It is important to keep everyone–doctors, researchers, families, affected individuals as up-to-date as possible regarding programs and research sponsored by ourselves, our parent foundation, the Barth Syndrome Foundation, Inc., and other world-wide affiliates.

Along with this website, a bi-yearly newsletter (Barth Syndrome Journal) is published by BSF Inc., to which we and the other affiliates submit articles. In order to keep our donors and Canadian families engaged and current about Canadian specific activities, we also have our own yearly bulletin. Contact us if you would like to receive a hard copy, of either publication, please let us know, and we would be happy to mail them to you.

Barth Syndrome Newsletter – November 2021

November 19th, 2021|

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 Syndrome Newsletter – March 2020

March 1st, 2020|

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

Barth Syndrome Newsletter – November 2018

November 23rd, 2018|

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

Barth Syndrome Newsletter – November 2016

October 23rd, 2016|

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

Barth Syndrome Newsletter – November 2015

October 23rd, 2015|

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

Barth Syndrome Newsletter – September 2014

September 23rd, 2014|

President’s Reportby Lynn Elwood As this has been a Barth Syndrome Foundation (BSF) conference year, I will focus much of my report on that important week. Barth Syndrome Foundation of Canada (BSFCa) was once again very involved in the conference. Lois was part of the steering committee, coordinated the travel and accommodations and logistics for the Science and Medicine presenters and worked at the

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