Awareness & Advocacy

Committee Chair: Trudy Flynn & Cindy Christopher 

DETAILS:

The Awareness & Advocacy Committee meets every third Tuesday of the month de 4:00 pm – 5:30 pm EST

The overall goal for advocacy and awareness raising is to help build a national movement of people actively working together to fight for the rights and needs of Canadian persons with fibromyalgia.

PURPOSE:

• Sensibiliser au fait que la fibromyalgie est une maladie chronique qui altère la vie
• to increase interests, compassion, and public support for fibromyalgia research, education, and advocacy
• to address and reduce stigmas and stereotypes and to influence changes in attitudes, behaviours, and beliefs toward fibromyalgia
• to effect change by stimulating self-mobilization, empowerment, and action among people with fibromyalgia
• to improve and ensure that the quality of life of persons with fibromyalgia is in accordance with Canada’s Charter of Rights and Freedoms
• to unite Canadians and Canadian residents with fibromyalgia to improve their quality of life according to Canada’s Charter of Rights and Freedoms (CCRF)
• to promote and safeguard the right of persons with fibromyalgia
• to influence decisions within political, economic, medical, and social institutions
• to build a stronger, respected voice within a fibromyalgia community

SCOPE OF RESPONSIBILITIES:

The primary responsibilities of the Committee are to:

• spread information about the disabling symptoms and effects of fibromyalgia
• launch national awareness campaigns on fibromyalgia
• develop social media campaigns in collaboration with other committees
• reach out and collaborate with national and local fibromyalgia-related community support agencies in Canada, to invite opportunities to work together to increase awareness
• connect with marginalized and vulnerable communities in Canada such as veterans, Indigenous communities, youth and young adults, and
• identify the most economical end effective platforms to optimize community engagement in awareness raising on fibromyalgia
• ensure our community outreach efforts are inclusive of all Canadians and Canadian residents living with fibromyalgia, regardless of race, national or ethnic origin, colour, religion, sex, age, mental/physical ability, sexual orientation, residency, marital status, or citizenship (CCRF);
• collaborer avec les organisations, associations, fondations et groupes de soutien liés à la fibromyalgie afin qu'ensemble nous renforcions notre voix unie pour combler les lacunes et les besoins ; et
• Networking to establish relationships with:
  • Ministères et fonctionnaires des gouvernements fédéral et provinciaux;
  • Professionnels de la santé et de la médecine;
  • Associations professionnelles des secteurs médical, de la santé et des assurances

in order to address issues, myths, biases, and stigmas about fibromyalgia.

Committee Chair: Trudy Flynn

DETAILS:

The Education Committee meets every second Tuesday of the month from 2:30 pm – 4:00 pm EST

PURPOSE: Fournir une éducation dirigée par les patients sur la fibromyalgie et son impact sur :

• personnes atteintes de fibromyalgie de tous âges, leurs familles et leurs soignants
  • children
  • teens
  • young adults
  • adults
  • seniors
• le secteur médical/de la santé
• les compagnies d'assurance
• professionnels du droit
• entreprises et employeurs
• agences gouvernementales
• organismes communautaires
• les établissements d'enseignement et
• le grand public

SCOPE OF RESPONSIBILITIES:

• To educate our target audience on the life altering symptoms of Fibromyalgia which often leads to debilitation, disablement, and impoverishment
• To debunk the myths and misconceptions of Fibromyalgia
• To de-stigmatize Fibromyalgia
• To emphasize the importance of early diagnosis in order to successfully manage and improve patient outcomes

Recherche

Committee Chair: Trudy Flynn

DETAILS:

The Research Committee meets every fourth Tuesday of the month de 2:30 pm – 4:00 pm EST

PURPOSE:

• to promote and develop fibromyalgia research
• to explore past and present studies on fibromyalgia worldwide
• to reach out and build relations with:
  • health researchers and clinical trial organizations in Canada
  • professionals and organizations worldwide who are interested in fibromyalgia research

SCOPE OF RESPONSIBILITIES:

The primary responsibilities of the Committee are to:

• raise awareness of the urgent need for Canadian based fibromyalgia research among researchers, health care professionals, educators and policy makers;
• list current research on fibromyalgia in Canada and worldwide;
• determine where, from a patient perspective, the gaps are in research, supports and services for the fibromyalgia community;
• soutenir les efforts visant à attirer des investissements financiers pour la recherche sur la fibromyalgie ; et
• encourager la recherche sur la fibromyalgie axée sur le patient au Canada.

Committee Chair: Trudy Flynn

DETAILS:

You are interested in volunteering with FAC as a Regional Representative?

We are currently seeking persons with fibromyalgia to fill the role of Regional Representatives for provinces and territories in Canada.

What’s involved?

Regional Representative responsibilities:

• Must be a Canadian Resident
• Must reside in the province or territory you wish to represent
• Member in good standing
• Be an active on at least one committee
• Stay informed about the latest developments in FM, ME, and Long Covid
• Share information about available workshop and current research in your province regarding fibromyalgia, post viral illness, and chronic pain
• Available to do Awareness and Advocacy through email in your province
• Know who your provincial members of the Legislature and your federal MP’s are
• Not to use your position to further your own agenda
• Needs to be computer literate and knowledgeable about how to use the internet and email
• Familiarity with Zoom and social media is an asset, but training can be provided
• Minimum time commitment of 2-4 hours per month and varies based on personal capacities

Committee Chair: Trudy Flynn

DETAILS:

Short Term working group projects on as-needed basis. Meeting times vary by project.

What’s involved?

Working Group Responsibilities:

• Must be a Canadian Resident
• Member in good standing
• Stay informed about the latest developments in FM
• Participate in various tasks such as document creation, written content for social media following branding templates and guidelines, etc.
• Not to use your position to further your own agenda
• Needs to be computer literate and knowledgeable about how to use the internet and email
• Familiarity with Zoom and social media is an asset, but training can be provided
• Minimum time commitment of 1-4 hours per month and varies based on personal capacities