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"...even if my voice waivers, I'm still going to speak out and I'm speaking out because Greg can't speak."

There are many words one could use to describe Jodee Karlowsky - creative mind, passionate leader, persistent advocate, dedicated caregiver, CALI grad, animal lover, instant grandma - the list goes on. But if you ask Jodee what brings the most joy to her colourful life, she'll tell you it's her husband, Greg.

After 15 years of marriage and 9 months of medical confusion, Greg was diagnosed with ALS in August, 2024. He and Jodee were left staring down a question that plagues anyone who's had a life-changing diagnosis: now what? Together, Jodee and Greg are finding out the answers one day at a time, learning to balance their bucket list with efforts to advocate for access to ALS resources across Manitoba.

Join us as we sit down with Jodee to talk about her journey of finding support in a landscape with little guidance, and the steps she's taking to make the process easier for others in the future.

For more information on the CALI program, visit https://als.ca/advocacy/canadian-als-learning-institute/.

For information regarding ALS Manitoba's support group, visit https://alsmb.ca/als-manitoba/services/.

For more information on the ElevenLabs Impact Program, providing free voice cloning licenses to individuals with ALS, visit https://elevenlabs.io/impact-program.

For more information on the ALS Canada Caregiver Mental Health Program, visit https://als.ca/get-support/community-support/supporting-the-mental-health-of-als-caregivers/.

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

These resources double as the references for today's episode!

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 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

Episode Reference List