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“They’ve found cures for other diseases in my lifetime. Why not me in my lifetime?”

Jason Ritchie is a 49-year-old husband and father of two with a simple motto when it comes to participating in ALS research: the more invasive, the better. While Jason would never call his June 2024 diagnosis a gift, he tells us it's clarified what's important to him in life and pushed him to pursue his goals without hesitation.

For Jason, this means blending meaningful time with family and friends with offering his time, energy, and body to ALS advocacy, fundraising, and research in as many ways as he can. It's all in an effort to improve outcomes for pALS of the future - carried by the hopeful knowledge that treatments are in development, and there's no reason one couldn't work for Jason.

In today's conversation, Jason tells us about his early symptoms, swift diagnosis, and the two questions he can't stop asking himself: Why do I have it? How did I get it? He shares the steps he's taking to answer those questions as a participant in CAPTURE ALS and the phase one clinical trial for Lumina, and his addiction to advocating for the Canadian Collaboration to Cure ALS to make sure critical research moves forward.

We also discuss the importance of openly and honestly discussing even the most taboo of ALS topics, and how practicing this honesty has allowed Jason to process his emotions. He explains how storytelling contributes to his fundraising for the ALS Canada Revolution Ride, an event the Ritchies hold near and dear to their hearts, and how he helps to shape the ride as a member of ALS Canada's Board of Directors.

Finally, we finish with a chat about seated darts, the Toronto Blue Jays, and the foster dog who was just meant to be.

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!

To access the transcript for this episode, click here.

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"We have invented a molecule in Manitoba. We are friendly Manitobans. And we will extend this friendliness globally."

Nitesh Sanghai became a friendly Manitoban in 2018 when he moved to Winnipeg from India to work under Dr. Geoffrey K. Tranmer as a post-doctoral candidate at University of Manitoba. Dr. Tranmer posed a tough challenge: synthesize a new molecule to help treat ALS. Nitesh hadn't heard of ALS, but inspired by his late father's words to "do something new," Nitesh hit the ground running. 6 months later, Borsantrazole™ was born.

Join us in this season finale of originALS: more than ALS as Nitesh tells us the story of Borsantrazole™, a story where passion, community, and mutual empowerment drive a narrative of triumph for the ALS community. We discuss the evidence that shows Borsantrazole™ has the potential to improve quality of life and extend life for ALS patients, the battle to manage expectations in the promising pre-clinical stage, and the funding needed to take Borsantrazole™ from bench to bedside.

Later, Nitesh shares his long and strenuous journey to become a first generation scientist, motivated by support from his father, Jay, and wife, Bhavna. Stick around to the end to hear some tidbits from Bhavna and Nitesh's eldest daughter, Parin!

To read Nitesh's thesis paper, click here.

For more information on Borotherapeutics Ltd., visit https://borotherapeutics.com/.

To read My Amyotrophic Lateral Sclerosis Journey (ALS) from weakness to diagnosis: A Journey of Hope, click here.

And for more information on ALS, visit ALS Canada at 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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"...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!

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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!

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"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.

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/

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"When you're caring for somebody living with ALS, it's going to be tough. You can't imagine it. You can't explain it. But being there for the person after they're gone, it'll mean the world to you."

Lea Storry, believe it or not, tells stories for a living. An accomplished writer, journalist, and CALI graduate, Lea’s life was profoundly shaped by her experiences with ALS through the diagnoses of her mother, Shela, and her close friend, Pauline. Those experiences led her to create Speaking ALS: An Anthology, a collaborative writing project that amplifies the untold stories of the ALS community. Join us for a conversation spanning grief, love, science, accessibility, support, and the power of storytelling through Speaking ALS.

To support Speaking ALS: An Anthology, visit ourfamilylines.ca/speakingals

For more information on the Carey Me Fund, visit vrhfoundation.ca/carey-me

For more information on the International ALS/MND Symposium, visit https://www.als-mnd.org/

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

Episode Transcript