Rare Mamas Rising: A Rare Disease Mom Podcast

RARE MAMAS RISING- EPISODE 46

Sharing Our Stories to Create Change

In this special Rare Disease Day episode of Rare Mamas Rising, host Nikki McIntosh explores the power of storytelling in the rare disease community. She shares why speaking up—whether through advocacy, education, or personal connection—can drive awareness, inspire action, and create lasting change. From helping newly diagnosed families feel less alone to influencing policies that improve care, our voices matter more than ever. Tune in to be encouraged, empowered, and reminded that together, we can make a difference.

CONNECT WITH NIKKI

Facebook

https://www.facebook.com/RareMamas1/

Instagram

https://www.instagram.com/Rare_Mamas/

Website

https://raremamas.com/

Email

[email protected]

PODCAST INFO

[email protected]

RARE MAMAS RISING- EPISODE 45

Building Endurance for the New Year

In this episode of Rare Mamas Rising, we're diving into strategies behind building endurance for the year ahead. From balancing effort with recovery and planning for moments of rejuvenation, this episode is packed with practical tips to help you avoid burnout and sustain your energy. We explore how to align your actions with your capacity, the importance of creating a rhythm of effort and restoration, and why saying no is essential. As you consider your goals and plans for the new year, this episode is your guide to building endurance to see them through and creating lasting strength all year long. Tune in to refuel and rise!

CONNECT WITH NIKKI

Facebook

https://www.facebook.com/RareMamas1/

Instagram

https://www.instagram.com/Rare_Mamas/

Website

https://raremamas.com/

Email

[email protected]

PODCAST INFO

[email protected]

RARE MAMAS RISING- EPISODE 44

Holidaying Your Way

with Rare Mama Nikki McIntosh

The holiday season can feel overwhelming for families raising children with rare diseases, but it doesn't have to be. In this episode, we explore how to create meaningful traditions and plans that work for your unique family. From letting go of guilt and unrealistic expectations to finding simple, joyful ways to connect, this episode is packed with practical tips and ideas for savoring the season. Discover how to balance your family's needs with holiday festivities, prioritize what truly matters, and embrace the beauty of "Holidaying Your Way." Tune in for inspiration and encouragement to help your family flourish during this busy time of year.

CONNECT WITH NIKKI

Facebook

https://www.facebook.com/RareMamas1/

Instagram

https://www.instagram.com/Rare_Mamas/

Website

https://raremamas.com/

Email

[email protected]

PODCAST INFO

[email protected]

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

Facebook

https://www.facebook.com/RareMamas1/

Instagram

https://www.instagram.com/Rare_Mamas/

Website

https://raremamas.com/

Email

[email protected]

PODCAST INFO

[email protected]

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

https://www.facebook.com/RareMamas1/

Instagram

https://www.instagram.com/Rare_Mamas/

Website

https://raremamas.com/

Email

[email protected]

PODCAST INFO

[email protected]

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

[email protected]

PODCAST INQUIRIES

[email protected]

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

Facebook

https://www.facebook.com/RareMamas1/

Instagram

https://www.instagram.com/Rare_Mamas/

Website

https://raremamas.com/

Email

[email protected]

PODCAST INQUIRIES

[email protected]

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

[email protected]

PODCAST INQUIRIES

[email protected]

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

Facebook

https://www.facebook.com/RareMamas1/

Instagram

https://www.instagram.com/Rare_Mamas/

Website

https://raremamas.com/

Email

[email protected]

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

[email protected]