Rare Mamas Rising: A Rare Disease Podcast – Détails, épisodes et analyse

PODCAST INFO

Rare Mamas Book Release Day + A Special Reading from the Introduction

Épisode 52

mardi 23 septembre 2025 • Durée 19:29

RARE MAMAS RISING- EPISODE 52

Rare Mamas Book Release + A Special Reading from the Introduction

Today is the day! Nikki's new book, Rare Mamas: Empowering Strategies for Navigating Your Child's Rare Disease, is officially here. In this very special episode, Nikki celebrates release day by sharing the heartfelt introduction, giving you a first look at the hope, strength, and sisterhood at the heart of Rare Mamas.

This book is a lifeline for rare moms, rare disease parents, and caregivers who are navigating the overwhelming and often isolating rare disease journey—whether you're just receiving a diagnosis or years into the caregiving trenches. If you've ever felt unseen, overwhelmed, or unsure of the path ahead, Nikki's hope is that this book and today's episode provide you with the strategies, strength, support, and sisterhood to rise to the call of rare parenting.

Order the book today at the links below:

Book Info: www.raremamas.com/book

Nikki's taken her lived experiences and hard-won wisdom from over a decade and poured them into a compassionate and actionable guide to help mothers navigate the complexities of rare disease parenting while finding strength, hope, and community. Inside the book, you'll learn how to:

Adopt the right mindset for the journey ahead
Advocate with confidence and diplomacy
Navigate complex medical, educational, and financial systems
Discover practical strategies for daily challenges
Feel capable and empowered to make decisions
Build a circle of support you can count on
Balance caregiving with your own well-being
Find strength in sisterhood and shared wisdom
Hold onto hope while facing the unknown
Rise to the call of rare parenting

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Facebook

PODCAST INFO

Growing Our Gratitude

Épisode 43

mercredi 20 novembre 2024 • Durée 13:59

RARE MAMAS RISING- EPISODE 43

Growing Our Gratitude with Rare Mama Nikki McIntosh

This Thanksgiving, join us to explore the powerful impact gratitude can have on our rare journeys. We'll dive into how simple acts of thanks can elevate our spirits, strengthen our health, and deepen our relationships with the incredible providers who support us every day. We'll uncover the science behind gratitude's high-vibrational energy and share practical ways to honor the people who make a difference in our lives. Tune in to celebrate the strength of our community and discover how we can grow our gratitude!

CONNECT WITH NIKKI

PODCAST INFO

Adapting Halloween Traditions

Épisode 42

jeudi 24 octobre 2024 • Durée 10:46

RARE MAMAS RISING- EPISODE 42

In this special Halloween episode of Rare Mamas Rising, we explore how to make Halloween fun, inclusive, and accessible for children with rare diseases. Nikki shares personal stories and practical tips, including creative trick-or-treating alternatives, sensory-friendly activities, and adaptive costume ideas. Whether your child uses a wheelchair, has sensory sensitivities, or faces other challenges, this episode offers ideas to help you celebrate the spooky season in a way that works for your family. Join us for insights, new traditions, and a little Halloween magic!

CONNECT WITH NIKKI

Facebook

PODCAST INFO

jessicafeinstories.com
https://www.instagram.com/feinjessica/

Loving With Every Breath with Breath Taking Author Jessica Fein

Épisode 41

mercredi 18 septembre 2024 • Durée 45:15

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

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

PODCAST INQUIRIES

Preparing for a Planned Hospital Stay

Épisode 40

mercredi 7 août 2024 • Durée 20:49

RARE MAMAS RISING- EPISODE 40

Preparing for a Planned Hospital Stay with Rare Mama Nikki McIntosh

In this episode of Rare Mamas Rising, host Nikki dives into the vital preparations for managing your child's upcoming surgery or medical procedure. Nikki, sharing from her own experience with her son Miles, offers a comprehensive guide to help you navigate the emotional and logistical challenges of hospital stays. From educating yourself and organizing support to practical tips for during and after the hospital visit, this episode is packed with actionable advice to ease your anxiety and ensure both you and your child are as prepared as possible. Tune in for heartfelt support and practical strategies to make this challenging time a bit smoother.

CONNECT WITH NIKKI

PODCAST INQUIRIES

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

Épisode 39

mercredi 3 juillet 2024 • Durée 40:42

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

PODCAST INQUIRIES

Mother's Day Episode: On Bonding and Being There

Épisode 38

mercredi 8 mai 2024 • Durée 13:32

RARE MAMAS RISING- EPISODE 38

Mother's Day Episode: On Bonding & Being There

with Rare Mama Nikki McIntosh

Join host Nikki on a heartfelt journey of motherhood in a special Mother's Day episode. From grand visions of bonding through shared interests to the reality of simply being present through life's challenges, Nikki shares personal anecdotes and insights that illuminate the essence of maternal love and resilience. Reflecting on her own experiences with her sons and the impact of rare diseases on their journey, Nikki celebrates the power of unwavering support and trust in nurturing deep connections with our children. Tune in to this touching tribute to the enduring bond between mothers and children, where simplicity reigns supreme and the beauty of being there shines brightest, especially on Mother's Day.

CONNECT WITH NIKKI

https://www.tscalliance.org/

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

Épisode 37

mercredi 13 mars 2024 • Durée 44:08

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.facebook.com/tscalliance

https://twitter.com/tscalliance

https://www.instagram.com/tscalliance/

CONNECT WITH NIKKI

National Organization for Rare Disorders (NORD)

Transforming Love Into Advocacy

Épisode 36

mercredi 14 février 2024 • Durée 17:04

RARE MAMAS RISING- EPISODE 36

Transforming Love Into Advocacy

with Rare Mama Nikki McIntosh

In honor of Rare Disease Day, we explore how a mother's love transforms into impactful advocacy, empowering us to conquer challenges and ignite change. In this episode, discover the passionate spirit that fuels our fight and learn practical tips for channeling love into action. Don't miss this episode as you gear up for advocating on Rare Disease Day and throughout the year!

LINKS & RESOURCES MENTIONED

EveryLife Foundation

Global Genes

Rare Disease Legislative Advocates (RDLA)

Rare Action Network

CONNECT WITH NIKKI