"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!

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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

"I sometimes maybe exaggerate a little too much how well I'm doing when I'm not really, just to give people the permission to engage. You wouldn't know that
I can barely brush my teeth anymore."

After Rick Zwiep's diagnosis in August of 2022, he was quick to become a loud and proud part of the ALS community, spreading awareness about the disease at every possible turn. Today, Rick sits on the board of directors for ALS Action Canada, where he leads a community support group to uplift his fellow pALS. Rick is also part of the ALS Super Fund's advisory council, providing his patient input as to how donated funds should be allocated across the country. Join us for a conversation of science, research, accessibility, support, and what it means to be a patient-led organization.

EDIT: We stated that, "To date, more than 100 genes have been identified that, when altered, can contribute to ALS." The ALS online Database or ALSoD website lists 152 genes and genetic variants that are connected to ALS. This may include some genes with variants that have been shown to be related to ALS, but the evidence is weak. The list includes information on all recorded genes in ALSOD, and the genes have been categorized. The categorization is subject to change based on new evidence and is a consensus which may be debatable among experts.

For more information on ALS Action Canada and the ALS Super Fund, visit https://www.alssuperfund.ca/

To view the ALS Super Fund 2024-2025 Impact Report, visit https://drive.google.com/file/d/12U8As6IIAoubCv-Ih-e2bpy9IRKifS0T/view

For more information on Everything ALS webinars, visit https://www.everythingals.org/

For more information on Eric Brunner’s project, Flickering Souls: Illuminating ALS, visit ericbrunnerart.com

For more information on the ALS Therapy Development Institute, visit als.net

For more information on Brooke Eby’s project, ALSTogether, visit alstogether.org

For more information on the Northeast ALS Alliance, visit neals.org

For more information on ALS, please visit the ALS Canada website at https://als.ca/

Episode Transcript