Canadian Association for Glycogen Storage Disease

Overview

Board of Directors/Officers

President/Treasurer/Board Member

Sandra Baletic

Mother of type 1a patient

Vice President/Secretary/Board Member

Sarah Thornton

Mother of type 1a patient

Board Member

Christina Lai

Mother of type 1a patient

Canadian AGSD Scientific Advisory Committee

Dr. John Mitchell

Dr. Michal Inbar-Feigenberg

Dr. David Weinstein

Kathy Ross, RD

The Canadian Association for Glycogen Storage Disease was founded with the hope of helping Canadian patients, parents and families affected by GSD. The purposes of Canadian AGSD are:

1

Support Research

To support research which contributes to the development of diagnostic tests and therapies for GSD, discovery of the cause of and cure of various glycogen storage diseases and/or other studies relating to GSD by:

  • (a)providing grants in aid of projects being conducted by other qualified charities (Canadian); and
  • (b)connecting scientists, researchers and medical professionals, along with their discoveries, to encourage collaboration of innovative ideas.
2

Support Patients & Families

To provide individuals affected by GSD and their families with:

  • (a)access to information about the disease, its consequences, and potential therapies;
  • (b)information to work with health care and community services to access best possible diagnostic and treatment modalities to optimize their quality of life;
  • (c)a conduit to services provided by others; and
  • (d)publicly available financial assistance to be used for the purchase of medical supplies for the management and treatment of GSD (in Canada).
3

Educate the Community

To educate the health care community and the public about GSD (including symptoms, effects, and treatment) by, for example:

  • (a)hosting, speaking at, or participating in symposiums, health care conferences and/or awareness programs;
  • (b)preparing and distributing educational material in print based and web based form;
  • (c)facilitating connections among health care professionals, researchers, and other stakeholders;
  • (d)preparing media releases and letter campaigns; and
  • (e)holding fundraising events
4

Maintain Funds

To receive and maintain a fund or funds and to apply all or part of the principal and income therefrom, from time to time, to qualified charities as defined in subsection 149.1(1) of the Income Tax Act (Canada).

Canadian AGSD Governance Overview