We are a nation-wide, entirely volunteer-based, charitable organization (registered charity number 86102 2002 RR0001) that works to find treatments, causes and a cure for Barth syndrome (BTHS). While independent, we are an affiliate of the Barth Syndrome Foundation, Inc. (BSF), and together we share a vision for a world in which not one more person shall suffer or perish from Barth syndrome.

Since the 2005 BSF grant cycle, we have participated in funding approved Barth syndrome specific research. We have contributed funds to researchers in Canada and the US studying the underlying biochemistry and genetics of the disorder, as well as searching for drugs to treat the disorder. All research applications are reviewed by the BSF’s world leading Scientific and Medical Advisory Board which consists of experts in various fields relevant to Barth syndrome.

This program is for Barth syndrome affected individuals and their families. BSF of Canada provides a caring community that provides each affected individual and their family information and emotional support. We are dedicated to improving quality of life, advancing treatments, and finding a cure for Barth syndrome. We are here to help, and are available at any time. We know from our own experience what a difference it can make to be able to reach out and connect with someone who knows what it is like to live with Barth syndrome.

Our on-going awareness program has two broad audiences–the medical community and the general public. We continuously meet with medical personnel to inform them about Barth syndrome, diagnostic alternatives, and treatments, ensuring that their patients get the care that is unique to Barth syndrome. Our extended families and friends help us to generate support among individuals and organizations.

MEET THE

Our Board of Directors is made up of individuals from across the country. Directors serve two-year terms, and are voted in at our Annual General Meeting in rotation. The Board of Directors is the legal authority for the Barth Syndrome Foundation of Canada (BSFCa). As a member of the Board, a Director acts in a position of trust for the BSFCa community and is responsible for the effective governance of the organization.

• Directors provide the leadership for the BSFCa, and support the Foundation’s mission of “Enhancing the lives and outcomes of Canadian individuals and families affected by Barth syndrome“.
• All board members are committed to the work of the BSFCa, have knowledge about Barth syndrome, and serve on different committees.
• Along with assisting families and individuals affected by Barth syndrome, Directors respond to inquires from professionals, organizations and students.

The Board is ably assisted by additional executive members, board advisors, as well as numerous volunteers who provide their time and talents in various methods.

Susan Hone
President

Susan has served many terms on the Barth Syndrome Foundation of Canada’s Board along with being on the BSFCa’s Executive for numerous years as well. She has also volunteered on the Barth Syndrome Foundation, Inc. Conference Planning Committee for the past few years. She has several years of volunteer experience including President of The Cerebral Palsy Parents Group for over 10 years and former Chairperson of the Early Childhood Intervention Program in Regina, Saskatchewan. She worked for the Provincial Government of Saskatchewan for over 25 years.

Susan lives with her husband Chris and son Jared who is affected with Barth syndrome, and Cerebral Palsy She has had four other children, Jessica, who is a Barth syndrome carrier, Jennifer, Jordan, who was affected with Barth syndrome and died at age three from complications of the syndrome and Joshua. Five precious grandchildren complete her family.

Laurel Pridgen
Board Member

Laurel is a mom of three children, two who are diagnosed with Barth Syndrome. Laurel and her family joined the foundation in 2020, shortly after discovering her boys had the disease. Originally from the United States, Laurel and her husband Steven moved to Canada in 2014 and reside in Calgary, Alberta. Laurel is involved in many aspects of her local community and enjoys spending time with her friends and family. As part of the executive committee and the board for the Barth Syndrome Foundation of Canada, Laurel is looking forward to supporting the ongoing mission of BSF Canada.

Lynn Elwood
Board Member

Lynn is one of the founding board members of Barth Syndrome Foundation of Canada and has held a number of positions on the board.  She has helped with governance issues, participated in several fundraisers and has brought a number of volunteers into the organization over the years.

Lynn is a Computer Science major from the University of Waterloo and has worked in the technology industry throughout her career.  She lives in Markham, Ontario and has a son affected by Barth Syndrome as well as an unaffected son.  There have been four Barth affected individuals within Lynn’s extended family and they are passionate supporters of the foundation and the work they do.

Marilyn Pridgen
Board Member

Marilyn lives in Calgary, Alberta and is married to Blake. As a mom to four children, she was kept busy with school, sport, and church activities. She also has a background in public health nursing. Her children are grown and now Marilyn is busy enjoying her seven grandchildren. She has two grandsons affected by Barth Syndrome and is grateful to be able to support their family’s journey with these health concerns. Marilyn enjoys working with seniors, doing Compassion Care for her church, and spending time at the family cabin.