『originALS: more than ALS』のカバーアート

originALS: more than ALS

originALS: more than ALS

著者: Flynn Mason & Hayley King
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originALS: more than ALS steps into the world of the incredible people affected by Amyotrophic Lateral Sclerosis or ALS. In each episode, hosts Flynn Mason and ALS Canada Community Ambassador Hayley King highlight firsthand experiences of one special guest. From the challenges of diagnosis to the passions that make each one of us unique, you’ll hear stories of hope for all that is possible, even in the face of a devastating disease. Whether you’re here for inspiration, to learn more, or to feel the power of a community coming together, originALS: more than ALS is for you.

© 2026 originALS: more than ALS
社会科学
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  • Nitesh Sanghai - From Grass to Grace
    2026/06/30

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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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    52 分
  • Jodee Karlowsky - Speak Your Truth
    2026/05/31

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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

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    49 分
  • Paula Trefiak - Everything In My Power
    2026/04/30

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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!

    Episode Transcript

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    1 時間 34 分
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