Participant Partner Advisory Council (PPAC)

CAPTURE ALS was designed to incorporate the voices of people affected by ALS. This includes people who are living with ALS, as well as their loved ones, friends, and communities.

The Participant Partner Advisory Council (PPAC) makes an essential contribution to CAPTURE ALS. It is comprised of people living with ALS and people who have loved ones or friends living with ALS. PPAC members are recruited from the four research centres involved in CAPTURE ALS and from the Canadian ALS community. Through regular meetings, the council helps shape:

• Research priorities
• Strategies for participant recruitment
• Promotional materials/activities
• Participant engagement
• Dissemination of findings
• And more

The PPAC is responsive to ongoing study needs and challenges, providing important feedback and perspectives to the CAPTURE ALS Executive Committee. Through these and other contributions, the PPAC ensures that the perspectives and priorities of people affected by ALS are reflected at every stage of CAPTURE ALS.

Partnership with people affected by ALS has been essential since the project’s beginnings.

• In 2019, CAPTURE ALS goals and objectives were affirmed by a letter writing campaign. Canadians affected by ALS sent 2378 letters to the federal government to ask for research funds to support CAPTURE ALS.
• In 2020, focus groups with people living with ALS and family members provided important feedback that influenced study design, procedures, and participant engagement strategies.

This work continues through the CAPTURE ALS PPAC, which began meeting in February 2021. To date the PPAC has provided specific input on plans for study promotion, optimizing recruitment, consent procedures, website development, research protocols, and participant engagement. PPAC members are recruited from the four research centres involved in CAPTURE ALS and from the Canadian ALS community.

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PPAC Members

*CAPTURE ALS is grateful for the important contributions of all PPAC members. Members control how their participation is publicly recognized.

We are grateful for the contributions of those who have served on CAPTURE ALS’ PPAC:
James Horan, August 2022 – December 2022
Taya Jones, January 2021 – August 2022
Barry Jones, January 2021 – August 2022
Dr. Jean Pierre Canuel, January 2021 – January 2022
Karine Gauthier, January 2021 – January 2022

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In Memoriam: Taya Jones, PPAC member January 2021 – August 2022

For Taya Jones, a diagnosis with ALS came in 2018. An athlete most of her life – figure skater as a child and an Ironman triathlete and marathoner as an adult – Taya’s first thought on diagnosis was for her three children. She reflected, “I need to help build my children’s resilience as much as I can right now, because my kids are going to be without me one day very soon – that’s the reality.” At the same time Taya noted: “ALS can take away my physical capabilities, but it doesn’t take my joy.”

Following her diagnosis, Taya become a tenacious advocate for ALS awareness and research. In the lead up to Lou Gehrig Day 2021, for example, she raised awareness for ALS by participating in media events with CTV, CBC and the USA group, i am ALS, as well as the ALS Canada Walk to End ALS finish line event. Taya noted, “We all know that the same thing that happened to Lou Gehrig 80 years ago still happens today – there’s no treatment for someone who’s diagnosed with ALS.”

As a member of CAPTURE ALS’ inaugural Participant Partner Advisory Council (PPAC), Taya made an invaluable contribution to CAPTURE ALS and to ALS research. In Taya’s words, CAPTURE ALS is “vital to the fight against ALS.” CAPTURE ALS will give us a comprehensive and deep understanding of the many ways that people experience ALS and is essential to the development of effective treatments. And effective treatments will bring hope to people living with ALS and their families. Taya passed away on August 7th, 2022.