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“I am now proving this disease is treatable.”

75% of Paula's extended family on her father's side is affected by familial ALS. Diagnosed in 2016, Paula has found life-saving treatment in the form of Tofersen, the first gene specific ALS therapy. She now works in advocacy at provincial, national, and global levels to develop expedited pathways in the drug approval process, striving for a future where ALS patients can access treatment before their lives are taken. Join us as we discuss growing up around ALS, participating in clinical trials, and the importance of advocacy.

To participate in ALS Canada's Cost of ALS Survey, visit https://legeropinion.co/2026-Cost-of-ALS

For more information on Tofersen, visit https://www.als.org/navigating-als/living-with-als/fda-approved-drugs/tofersen

For more information on CAPTURE ALS, visit https://captureals.ca/

For more information on the Global CRLI program, run by the International Alliance of ALS/MND, visit https://www.als-mnd.org/events-programs/alliance-academy/crli-2025/

And for more information on ALS, visit https://als.ca/

If you'd like to share your story on the show, or have ideas for what you'd like to hear us speak about next, send us an email at originals.morethanals@gmail.com. We'd love to hear from you!

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