Rare Mamas Rising

Nikki McIntosh
Rare Mamas Rising

A podcast for mothers of children with rare diseases to find support, advice, community, and hope! Join Rare Mamas founder and podcast host, Nikki McIntosh as she talks with remarkable rare moms rising from difficult diagnoses for their children. Catch an episode of Rare Mamas Rising and walk away encouraged, uplifted, and empowered!

  1. 18 SEPT

    Loving With Every Breath with Breath Taking Author Jessica Fein

    RARE MAMAS RISING- EPISODE 41 Loving with Every Breath with Breath Taking Author Jessica Fein Jessica Fein is the author of Breath Taking: A Memoir of Family, Dreams, and Broken Genes and host of the "I Don't Know How You Do It” podcast, which features people whose lives seem unimaginable and who triumph over seemingly impossible challenges. Her writing has appeared in Newsweek, Psychology Today, The Boston Globe, HuffPost, Scary Mommy, Zibby Mag, Kveller, and more. Jessica is a relentless warrior in memory of her dynamic daughter, whom she lost to the rare disease MERRF Syndrome in 2022. Her work encompasses hope and humor, grit and grace–the tools that make up her personal survival kit. Jessica serves on the Board of Directors of MitoAction. She’s the mother of three, whom she and her husband adopted from Guatemala. In this episode, Jessica shares her powerful journey with raw honesty, wisdom, and heart. Join us as we explore the intertwined emotions of joy and sorrow, love and loss, and uncover why Jessica’s new book is truly a love story and a moving testament to the enduring power of love.   EPISODE HIGHLIGHTS Background about Jessica and her family  How, as a problem-solver by nature, Jessica dealt with an unsolvable situation The difference between living in fear and living with fear Nurturing the conflicting emotions of sorrow and joy   Staying present while experiencing painful circumstances The journey to writing Breath Taking Why Breath Taking is described as a love story Jessica’s hopes for her book Jessica’s learnings and advice for other rare mamas   LINKS & RESOURCES MENTIONED Jessica Fein jessicafeinstories.com https://www.instagram.com/feinjessica/ https://www.facebook.com/jessica.fein.92/ https://www.linkedin.com/in/jessica-fein-b643b09/ https://podcasts.apple.com/us/podcast/i-dont-know-how-you-do-it/id1668168226   Breath Taking jessicafeinstories.com https://www.goodreads.com/author/show/826590.Jessica_Fein   Mito Action https://www.mitoaction.org   CONNECT WITH NIKKI Website https://raremamas.com/ Instagram https://www.instagram.com/Rare_Mamas/ Email info@raremamas.com   PODCAST INQUIRIES podcast@raremamas.com

    45 min
  2. 3 JUL

    Blazing Trails to Cure and Care with The Charlotte and Gwenyth Gray Foundation to Cure Batten Disease with Founder Kristen Gray

    RARE MAMAS RISING- EPISODE 39 Blazing Trails to Cure and Care with The Charlotte and Gwenyth Gray Foundation to Cure Batten Disease Founder Kristen Gray    Kristen Gray is an extraordinary mom of four incredible children: Charlotte, Gwenyth, Callan, and Gavin. From the moment her eldest two, Charlotte and Gwenyth, were diagnosed with Batten Disease, she embarked on a courageous journey blazing trails in rare disease advocacy. She founded The Charlotte & Gwenyth Gray Foundation to Cure Batten Disease and established The Gray Academy, a beacon of hope and education for children facing complex neurological disorders. Her unwavering dedication and pioneering spirit have been a driving force behind groundbreaking initiatives to find treatments and support families in similar situations. Join us as we delve into her inspiring story of resilience, hope, and relentless determination to change the future for her children and others.   EPISODE HIGHLIGHTS The discovery of Charlotte and Gwenyth’s Batten Disease diagnoses Founding The Charlotte & Gwenyth Gray Foundation to Cure Batten Disease Development of The Gray Academy and their approach to education Balancing advocacy and motherhood Kristen’s vision for the future of children and families affected by neurological disorders Kristen’s best learnings for other rare mamas   LINKS   The Charlotte & Gwenyth Gray Foundation to Cure Batten Disease Website: www.curebatten.org  Instagram: @curebatten Facebook: @curebatten   The Gray Academy Website: www.thegrayacademy.org Instagram: @thegrayacademy Facebook: @thegrayacademy     CONNECT WITH NIKKI Website https://raremamas.com/ Instagram https://www.instagram.com/Rare_Mamas/ Email info@raremamas.com   PODCAST INQUIRIES podcast@raremamas.com

    41 min
  3. 13 MAR

    Paying It Forward with TSC Alliance Director of Community Support and Outreach Shelly Meitzler

    Shelly Meitzler is the Director of Community Support & Outreach at TSC Alliance, an internationally recognized nonprofit dedicated to Tuberous Sclerosis Complex (TSC), a rare genetic disorder causing tumors in various organs. With a personal journey spanning over two decades, Shelly's dedication stems from her own family's experience with TSC. As a parent of two children with TSC, Ashlin, and Mason, as well as daughter Mikenna, Shelly draws from her firsthand experience to offer invaluable insight and assistance to families navigating similar paths. Having volunteered in the TSC community for 14 years before joining the Alliance in 2017, she's committed to empowering families with resources and support to advocate for themselves and their children. Her unwavering drive and passion make her a powerful advocate in the TSC community. In this episode, hear from this passionate advocate who offers sage wisdom for all parents navigating the rare disease road.     EPISODE HIGHLIGHTS Background about Shelly and her family  All about Tuberous Sclerosis Complex Navigating the very different paths of two children with TSC How Shelly became involved with TSC Alliance and her role today Advice for parents interested in getting involved with a patient advocacy group or non-profit organization The importance of community building and involvement in rare disease advocacy Shelly’s learnings and advice for other rare parents       LINKS   TSC Alliance https://www.tscalliance.org/ https://www.facebook.com/tscalliance https://twitter.com/tscalliance https://www.instagram.com/tscalliance/     CONNECT WITH NIKKI   Website https://raremamas.com/ Instagram https://www.instagram.com/Rare_Mamas/ Email info@raremamas.com

    44 min
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A podcast for mothers of children with rare diseases to find support, advice, community, and hope! Join Rare Mamas founder and podcast host, Nikki McIntosh as she talks with remarkable rare moms rising from difficult diagnoses for their children. Catch an episode of Rare Mamas Rising and walk away encouraged, uplifted, and empowered!

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