• BONUS EP: Living With The Worst Types of Brain Cancer Like GBM & DIPG - Live on Clubhouse - Hosted by xCures

  • Sep 22 2022
  • Durée: 52 min
  • Podcast

BONUS EP: Living With The Worst Types of Brain Cancer Like GBM & DIPG - Live on Clubhouse - Hosted by xCures

  • Résumé

  • Greg Link is an 8 year GBM survivor, athlete, entrepreneur and investor originally from New York and living in Miami and Los Angeles.  Learn more about Greg here: https://people.com/health/greg-link-gbm-awareness-day/

    Devin Ryan is living with Glioblastoma and uses the Optune helmet to treat her tumor.  She loves being outdoors, lightsaber fencing and connecting with others facing a similar diagnosis.

    Anne Donguy is the mother of a 12 yo boy named Anatole who was diagnosed in May 2018 with a Diffuse Midline Glioma (DMG) on the thalamus. At that time, the tumor was inoperable, incurable, and they were told soon enough after radiotherapy and a first line of chemo that nothing could be done.  Now, with the help of xCures and the Musella Foundation, Anatole found a clinical trial drug he could use and his tumor shrunk by more than 80%. Anatole, despite important sequels (hemiparesi, bad vision, dizziness, fatigue), is a little guy who goes to school, has friends, plays checks and lives a life as normal as possible. He is a little miracle.

    Anne wrote a novel (in French) that is inspired by their story, it is called an exceptional summer.
    http://www.denoel.fr/Catalogue/DENOEL/Romans-francais/Un-ete-exceptionnel

    Leslie Jared is a 15 year cancer survivor who spent 4 years as a nurse advocate for other cancer patients before joining ChadTough.org and becoming a DIPG Navigator, helping patients and families find treatments for this rare tumor that affects young children.  Find Leslie at www.mydipgnavigator.org

    - - -

    In this live salon from 9/13/22 on Clubhouse, Greg, Devin, Anne and Leslie discuss their experiences as patients, caregivers and advocates living through GBM and DPG.

    This conversation was hosted with the support of xCures, learn more and signup for their xINFORM platform that pairs patients with clinical trials at www.xcures.com/brain

    Learn more about LIFECHANGES at www.ourlifechanges.co and the Love Extremist Project at www.extremist.love

    --- Support this podcast: https://podcasters.spotify.com/pod/show/loveextremistradio/support
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