FASD Lived Experience Leadership Fund: Increasing Research Participation

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People with lived experience must be at the table when discussing research, policy, and practice. However, economic inequality is often a barrier to the “Nothing About Us, Without Us” principle, which CanFASD fully endorses. Attending conferences, meetings and participating in research comes with significant costs. The cost of flights, hotels and extra support aren’t feasible for many people with FASD and their caregivers.

In light of this, CanFASD has been brainstorming how we can mobilise the generosity of our community. We want to give people with lived experience the opportunity to attend events that they otherwise wouldn’t be able to.

Meet Chris

Chris Fillion is an advocate for the FASD community. He received a diagnosis of FASD and ADHD at age 9. Navigating his youth within the child and family services system provided Chris with insights that fueled his passion for advocacy. He is a Direct Support Worker, the Coordinator for Visions and Voices and a Manitoba FASD Coalition board member. Here he ensures that powerful, personal narratives challenge existing stigmas and promote a more profound understanding of FASD. Chris balances his professional responsibilities with his roles as a loving husband and a dedicated foster parent.

Chris is incredibly passionate about improving the lives of people with FASD and is eager to contribute his unique perspective to the discussions at this year’s FASD Conference. The FASD Conference 2024 is a global event hosted by FASD United which is taking place in Seattle, the birthplace of the FASD diagnosis in North America.

Chris is a Self-Advocate and the Coordinator of the Manitoba Visons and Voices programs that supports self-advocates with FASD to share their stories with others. Learning and networking with others is very important to this program. But due to financial constraints, Chris is unable to cover all the expenses associated with attending the conference. Chris needs to raise $5000 to cover his and his colleague’s flights, accommodation and essentials for his journey from Manitoba to the United States.

Contribute today

We are building a fund at CanFASD to cover the costs for people with FASD Lived Experience to participate in research including conferences and meetings. Funds raised this year will support Chris and one of his advocates to attend the FASD Conference in Seattle focusing on adults and youth with FASD. Your contribution, no matter how big or small, will make a significant difference in Chris’ ability to participate in this valuable opportunity that he is eager to include his voice and his experience.

If you are able to contribute, please donate through our website. With the Conference taking place in April we don’t have long to raise this amount!

FASD Lived Experience Leadership Fund: Increasing Research Participation

Chris is the first person who we’ll be raising money for in our FASD Lived Experience Leadership Fund. Above all, this fund has been set up in order to help people like Chris be a part of national and international events that aim to advance FASD research.

Please consider making a donation. This is our first step in setting up this fund that aims to give back to our community. We need your help to make this first venture successful. With your support, we will continue to raise money for other individuals with lived experience from across the country for similar opportunities.

It is in all of our interests that the voices of people with lived experience are brought with us everywhere we gather to collaborate on FASD projects. On behalf of Chris and the team at CanFASD, we hope we can work together to achieve this.

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