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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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"I want to do it. Give me a minute. I’m looking disabled, it might not be graceful, but I want to do it. Or at least try to do it.”

Shawn Penno is a bright light of positivity in the ALS community. After his diagnosis in 2023, Shawn has become an active participant in ALS advocacy and research, determined to move the needle towards a cure in any way he can. Guided by his mantra, "Do what you can, while you can," Shawn is a beacon of hope for his fellow PALS. Join us as we discuss post-diagnosis career shifts, clinical research, government funding, home renovations, and more in this episode of originALS: more than ALS.

For more information on Everything ALS, the Everything ALS Health Tracker App, and the Pathfinders program, visit https://www.everythingals.org/

For more information on UBC'S Project HOPE, visit https://projecthopealsbc.ca/

For more information on BC's Move To Cure ALS, visit https://movetocurealsbc.donordrive.com/home

For more information on Ales for ALS, visit https://a4a.als.net/

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!

Episode Transcript

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" ...to be vulnerable like that, I think it's just all a part of the advocacy and trying to do what people in the ALS community have been trying to do for generations, which is to, you know, generate awareness and some level of understanding"

Eric Dane passed away on February 19th, 2026, less than a year after announcing his ALS diagnosis to the public. Eric Dane was best known as an actor with roles as Mark Sloan in Grey's Anatomy and Cal Jacobs in Euphoria, but more than that, he was a father, husband, friend, and fierce ALS advocate. Join us as we speak on Eric Dane and his ALS legacy.

For more information on I AM ALS, visit iam.org

For more information on Target ALS, visit targetals.org

For more information on ALS, visit als.ca

To reach out to us, send an email to originals.morethanals@gmail.com. We'd love to hear from you!

Episode Transcript