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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!

Episode Transcript

Reference List

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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!

Episode Transcript