RARE MAMAS RISING- EPISODE 51

The Making of Rare Mamas: Reflections on Writing and Rare Parenting

In this episode of Rare Mamas Rising, host Nikki takes listeners behind the pages of her upcoming book, Rare Mamas, to share how the writing journey mirrored the rare parenting journey in powerful and unexpected ways. Through honest storytelling, she unpacks the highs, the lows, and the lessons that connect directly to life as a rare mama.

She covers:

·       The hardest and easiest chapters to write — from reliving the grief of “D-Day” to finding hope in Rising to the Call, the chapter that inspired the name of this podcast.

·       The easiest and hardest parts of the process — how writing drew on Nikki’s creativity, career, and even her improv training, while publishing tested her patience and reminded her of the difficulties of rare parenting.

·       Unexpected lessons in calling and community — the reminder that doing good doesn’t mean it’s easy, the importance of going back to your “why,” and the gift of community and sisterhood that makes the journey possible.

Nikki’s hope is that listeners hear their own stories reflected in these lessons, and that when you read this book, you feel that same sisterhood woven through every page, and the solidarity of a community that is rising together.

Links & Resources Mentioned:

Join the Book Interest List: www.raremamas.com/book

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 50

Introducing Rare Mamas: A Rare Disease Parenting Book by Nikki McIntosh

Nikki McIntosh—rare disease mom, advocate, caregiver, and founder of Rare Mamas—shares her biggest news yet: the upcoming release of her debut book, Rare Mamas: Empowering Strategies for Navigating Your Child’s Rare Disease, launching September 23rd.

This heartfelt and practical rare disease parenting book is written for mothers of children with rare diseases who are navigating the overwhelming world of rare diagnoses, caregiving responsibilities, and medical advocacy. Tune in to hear the emotional story behind the book, what’s inside, and how you can be part of this powerful movement of support, strength, and sisterhood for rare disease moms.

• Why she wrote Rare Mamas, a first-of-its-kind resource for moms raising children with rare diseases
• What’s inside the book (28 chapters packed with caregiver tools, advocacy strategies, emotional support, and stories from lived experience)
• How she kept writing through surgeries, hospital stays, exhaustion, and uncertainty
• What this guide offers for parents of medically complex children—including guidance on healthcare, education, systems, and self-care
• How to join the Rare Mamas Book Interest List and help share this support resource with the broader rare disease community

Links & Resources Mentioned:

• Join the Book Interest List: www.raremamas.com/book
• Follow on Instagram: @rare_mamas
• Become a Rare Mamas Ambassador – DM @rare_mamas or email [email protected] to get involved

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 49

Holding On To Our Identity

with Rare Mama Nikki McIntosh

In this empowering Mother’s Day episode of Rare Mamas Rising, host Nikki invites listeners into a raw, tender conversation about what it means to hold on to your identity while parenting a child with a rare disease. From personal reflections to stories from fellow rare moms, this episode explores the invisible shifts in identity and small but powerful ways to reconnect with who you are. Because this Mother’s Day, we’re celebrating the whole you— not just the caregiver, but the creative, the dreamer, the friend, the person. This episode is a tribute to the woman behind the diagnosis — a celebration of who you are, who you were, and who you’re becoming.

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 48

Spring Cleaning: Letting Go of Things That No Longer Serve Us

with Rare Mama Nikki McIntosh

In this uplifting episode of Rare Mamas Rising, Nikki invites you to embrace spring’s renewal by letting go of what no longer serves you—draining digital habits, old stress loops, unhelpful routines, and even relationships or thoughts that weigh you down. With personal insights and actionable steps, she guides Rare Mamas through clearing the clutter—mental, emotional, and physical—to make space for peace and strength. Tune in to discover how shedding these burdens can lighten your load and lift you up, because as spring blooms, so can we.

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 47

Tackling Therapy Burnout

with Rare Mama Nikki McIntosh

In this episode, Nikki dives into the all-too-real challenge of therapy burnout—when the endless cycle of PT, OT, and more leaves both Rare Mamas and their kids feeling overwhelmed. Explore how to spot the signs of burnout, practical ways to lighten the load with help from therapists, and when to hit pause for a much-needed reset. It's all about staying attuned to our kids’ and our own emotional well-being, empowering us to find strength even in the toughest moments.

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 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]