Team STURK-TREK
Eric & Claudette Sturk
with Vic Rafuse
“Your research - even if it’s only a small change - will make a big change!”
Eric Sturk
Claudette & Eric Sturk were guests at the 2022 AMAP meeting. Claudette is a retired teacher and Eric is a retired lawyer. They were an active couple who loved swimming, hiking, golfing, curling and many other activities including running around after their 11 grandchildren.
That lifestyle changed in 2020 when Claudette was diagnosed with ALS and Eric became Claudette’s carer. Claudette was healthy and active until just before her diagnosis. As the disease progressed, Claudette’s mobility was affected and she needed to use a cane. She later exchanged her cane for a walker, and nowadays Claudette gets around in ALyS, her trusty wheelchair, which was supplied by the ALS Society of NB/NS. Claudette says she can still swim - 20 lengths of a 25 meter pool – as long as the pool has a lift.
Claudette is a champion for ALS, spreading the word as much as she can. She will even be featured in the October issue of Macleans. She says increasing awareness (of the disease) is critical. ALS is as prevalent as MS, but not as well known. Therefore, there is a need for advocacy.
Claudette says “there is hope”. What she hopes for is:
More funding for (ALS) research
More treatments leading to better quality of life
Faster diagnosis of ALS
Faster drug approval
Prevention
One of the things that Claudette would like to see more support for is the Canadian ALS Learning Institute, for people affected by ALS. The Learning Institute provides attendees with an online, small-group learning experience to better understand the Canadian ALS landscape, clinical research and therapy development, and how new therapies become approved and accessible to Canadians. Participating in the institute is an opportunity to learn more about the ALS research process and how to advocate effectively for access to Health Canada approved therapies.
Applications did close in early October but they hope to have another opportunity in the Spring – details on the ALS website at https://als.ca/get-involved/canadian-als-learning-institute/