About the Foundation

On-going Programs

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.

Science & Research

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.

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Health Counselling

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.

Health Information Activities

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

Barth Syndrome Foundation of Canada Team

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.

Jasmine Champagne
Board Member

Jasmine lives in Vancouver Island, Canada, in a very small community on the west coast, with her husband Mark and their sons, Jordan and Caleb. Caleb, the younger of the two boys, went into complete heart failure on day two of his life. He was diagnosed with Barth syndrome 19 days later. 

After graduating from Vancouver Island University with a Bachelor of Education, Jasmine worked in the school district as a teacher on call as well as a Behaviour Interventionist for three years. She then accepted a permanent position in a private school as a grade one teacher. 

At the 2018 Barth Syndrome International Scientific, Medical and Family Conference, Jasmine was a presenter at the Patient Focused Drug Development meeting. In September of 2020, Jasmine joined the Executive of the Barth Syndrome Foundation of Canada (BSFCa) and was elected to the BSFCa Board in June 2020. She is eager to help bring more awareness and to raise funds for Barth syndrome. In addition to her work with BSFCa, Jasmine is delighted to serve as a member of the Fundraising Committee for Barth Syndrome Foundation.

 

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.

We appreciate all our

Volunteers

We are very proud to be able to say that the Barth Syndrome Foundation of Canada is run entirely by volunteers. From the Board of Directors and Executive to the envelope stuffers, everyone gives that most valuable of all commodities—their time.

We are extremely grateful to everyone who helps us out. Our volunteers have gone above and beyond to help us carry out our programs, and assist us in all areas of them. They have great ideas and suggestions, and offer their talents spontaneously and eagerly, for which we are thankful.

The jobs our volunteers perform include (but are not limited to): internet research, newsletter editing and production, knitting, phoning, surveying, collating, singing, golfing, proof reading, fundraising, dancing, speaking to people in the medical profession, woodworking, collecting items, bookkeeping, envelope stuffing, curling, graphic drawing, and so on.

We are always looking for new, enthusiastic volunteers, if you have would like information on how to be a volunteer for the Barth Syndrome Foundation of Canada, and want to be a part of our team, please contact us. We have both short-term and long-term jobs available.

BECOME A VOLUNTEER

Donate please!

The Barth Syndrome Foundation of Canada is a completely volunteer, charitable foundation. We fund critical research and provide support and information to affected individuals, families, and medical professionals.

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