22 episodes

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!

Rare Mamas Rising Nikki McIntosh

    • Kids & Family

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!

    Episode 021 - Lifting Her Voice and Envisioning Change with Through Evely’s Eyes Founder and Rare Mama Tameka Diaz

    Episode 021 - Lifting Her Voice and Envisioning Change with Through Evely’s Eyes Founder and Rare Mama Tameka Diaz

    • 42 min
    Ten Minutes With A Rare Mama- Amanda Brundage, UFC Fighter and ALG13 Mom

    Ten Minutes With A Rare Mama- Amanda Brundage, UFC Fighter and ALG13 Mom

    RARE MAMAS RISING- EPISODE 020
    10 Minutes With A Rare Mama- Amanda Brundage, UFC Fighter & ALG13 Mom
     
     
    Amanda is a former UFC fighter, a current self-defense instructor, and mother to Kingsley, who has a rare condition called ALG13 that has only thirty-seven known cases worldwide. A true fighter in every sense of the word, Amanda shares how she uses her background and training to help her daughter in a fight she never expected. Amanda’s learned to trust the process, and through it, she’s found a new calling. This episode packs a punch!
     
     
    EPISODE HIGHLIGHTS
    The ways Amanda rises to meet the challenge of being a rare mama  The surprising new career Amanda discovered through her journey How Amanda’s using her influence and voice to spread ALG13 awareness Amanda’s best advice for other rare mamas What Amanda loves about Kingsley  
    LINKS & RESOURCES MENTIONED
     
    Amanda Brundage
    @ABCNation115
     
    Cody Brundage
    @Cody_Brundage
     
     
     
    CONNECT WITH NIKKI
     
    Facebook
    https://www.facebook.com/RareMamas1/
    Instagram
    https://www.instagram.com/Rare_Mamas/
    Website
    https://raremamas.com/
    Email
    info@raremamas.com
     
     
     

    • 14 min
    A Big Reason to Be Here with FOXG1 Research Foundation Co-Founder, Executive Director, and Rare Mama- Nicole Johnson

    A Big Reason to Be Here with FOXG1 Research Foundation Co-Founder, Executive Director, and Rare Mama- Nicole Johnson

    RARE MAMAS RISING- EPISODE 019
    A Big Reason to Be Here with FOXG1 Research Foundation Co-Founder, Executive Director, and Rare Mama- Nicole Johnson
    Nicole Johnson is the co-founder of the FOXG1 Research Foundation and mother to Josie, who has a severe mutation of the FOXG1 gene. The FOXG1 Research Foundation is not only accelerating research to cure FOXG1 Syndrome and brain disorders but also driving change in the rare disease landscape. Bringing more than two decades of experience in media and communications, Nicole currently serves as FOXG1 Research Foundation’s Executive Director overseeing every vertical across the organization. In this episode, Nicole’s strength of purpose blazes bright, and she speaks with firsthand knowledge about the powerful combination of science and hope. She’s a 2022 Global Genes Champion of Hope Award nominee, and she believes we are all here for a really big reason. After listening to this hope-inducing conversation, you’re sure to understand why!
     
    EPISODE HIGHLIGHTS
    The journey to a FOXG1 diagnosis for Nicole’s daughter Josie How Nicole co-founded the FOXG1 Research Foundation and the work she’s doing as the Executive Director The progress the FOXG1 Research Foundation has made, and its impact on the way natural history studies are conducted Why we are living in a “science renaissance” Nicole’s concept of “Happiness Hacks” to keep from living inside the gloom  
     
    LINKS & RESOURCES MENTIONED
     
    FOXG1 Research Foundation
    www.foxg1research.org
     
    Nicole Johnson
    Meet Nicole & Josie: https://youtu.be/NRT7lVuBTJ4
    LinkedIn: https://www.linkedin.com/in/nicole-johnson-foxg1/
    Email: nicole@foxg1research.org
     
    Global Genes
    https://globalgenes.org/
     
     
    CONNECT WITH NIKKI
     
    Facebook
    https://www.facebook.com/RareMamas1/
    Instagram
    https://www.instagram.com/Rare_Mamas/
    Website
    https://raremamas.com/
    Email
    info@raremamas.com
     
     
     

    • 28 min
    Elevating Our Advocacy with Rare Action Network State Ambassador, Cure SMA Social Work Manager and Rare Mama Danyelle Sun

    Elevating Our Advocacy with Rare Action Network State Ambassador, Cure SMA Social Work Manager and Rare Mama Danyelle Sun

    RARE MAMAS RISING- EPISODE 018
    Elevating Our Advocacy with Rare Action Network State Ambassador, Cure SMA Social Work Manager, & Rare Mama Danyelle Sun
     
    August is spinal muscular atrophy awareness (SMA) month, and in honor, my guest is SMA mom Danyelle Sun. Danyelle has served Cure SMA as a board member and Wisconsin chapter officer, building community and championing a better future for people living with SMA. Currently, she works as the Cure SMA Social Work Manager, providing support to families, educating elected officials about SMA, and advocating for newborn screening. Not only is Danyelle a passionate advocate for the SMA community, but she’s also a dedicated advocate for the entire rare disease community. She serves as the Wisconsin Rare Action Network® Volunteer State Ambassador and has successfully built a strong network of over 280 advocates throughout Wisconsin. She works tirelessly with state legislators and their staff on numerous policy initiatives affecting the rare disease community. Danyelle is making such an impact on the rare disease community that in 2021 she received the NORD Rare impact award. Danyelle is a dedicated awareness-builder, a hard-working advocate, and a true changemaker. In this episode, Danyelle uses her ten years of experience to help us grow as advocates and elevate our advocacy.
     
     
     
    EPISODE HIGHLIGHTS
    The journey to an SMA diagnosis for Danyelle’s two children, Ruby and Landon Tips on how to become stronger awareness builders Resources and action ideas on how to engage in state advocacy How to effectively utilize a social worker’s support and resources Expecting and awaiting goodness  
     
    LINKS & RESOURCES MENTIONED
     
    https://www.curesma.org/
    https://rareaction.org/
    https://everylifefoundation.org/
    https://globalgenes.org/
    https://rarediseases.org/
    https://www.rarediseaseday.org/
    https://familyvoices.org/
    https://www.ndrn.org/
     
     
    CONNECT WITH NIKKI
     
    Facebook
    https://www.facebook.com/RareMamas1/
    Instagram
    https://www.instagram.com/Rare_Mamas/
    Website
    https://raremamas.com/
    Email
    info@raremamas.com
     
     
     

    • 54 min
    Turning Pain into Purpose with The Avalon Foundation President, Hypophosphatasia Advocate, Life Coach, and Rare Mama Deb Ayres

    Turning Pain into Purpose with The Avalon Foundation President, Hypophosphatasia Advocate, Life Coach, and Rare Mama Deb Ayres

    RARE MAMAS RISING- EPISODE 017
    Turning Pain Into Purpose with President of The Avalon Foundation, Hypophosphatasia Advocate, Life Coach & Rare Mama Deb Ayres
     
    Deb Ayres, rare mama to Avalon, is a certified life coach and wellness practitioner with a degree in psychology. When Avalon was getting a crucial yet incredibly painful treatment for the rare condition Hypophosphatasia, Avalon’s grandmother gave her a pain box to support her through treatment. Avalon strongly felt that supporting children who are enduring painful treatment was vital, and the idea for The Avalon Foundation was born. Deb and Avalon built The Avalon Foundation to promote youth leadership through offering support to kids receiving life-altering treatment for rare diseases. In this episode, Deb offers not-to-be-missed ideas and insights from both her professional and personal experiences. She’s a sage shepherd guiding and leading with both wisdom and heart!
     
     
    EPISODE HIGHLIGHTS
    The journey to Avalon’s rare diagnosis Advocating for school inclusion and pivoting to find alternative avenues Avalon’s resilience and rise to advocate for herself How The Avalon Foundation got started  The new mindset Deb adopted and how she became empowered Savvy tips for navigating rare life from a certified life coach Deb’s best advice for other rare mamas (it’s one of my favorites!)  
    LINKS & RESOURCES MENTIONED
     
    Deb Ayres
    DebAyres@KidsCaringForKids.org
     
    The Avalon Foundation
    https://kidscaringforkids.org/
    https://www.facebook.com/theavalonfoundation
     
     
    CONNECT WITH NIKKI
     
    Facebook
    https://www.facebook.com/RareMamas1/
    Instagram
    https://www.instagram.com/Rare_Mamas/
    Website
    https://raremamas.com/
    Email
    info@raremamas.com
     
     
     

    • 39 min
    Father's Day - Ten Minutes With A Rare Dad- Tony McIntosh - SMA Dad

    Father's Day - Ten Minutes With A Rare Dad- Tony McIntosh - SMA Dad

    • 13 min

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