Advertise on podcast: Rare Mamas Rising: A Rare Disease Mom Podcast

RARE MAMAS RISING- EPISODE 56 Learning to Mother Ourselves   In this Mother's Day episode of Rare Mamas Rising, Nikki explores what it means for rare moms to mother themselves with the same tenderness, attention, and care they so freely give their children. From noticing our needs before they become emergencies, to honoring our limits, speaking to ourselves with kindness, advocating for our own well-being, creating a soft place to land, and making room for joy and delight, this episode is a gentle reminder that rare mamas are worthy of good care too. Because we are not only the ones who comfort, protect, and hold everyone else—we are human beings with hearts that need holding, bodies that need rest, and spirits that need tending. Happy Mother's Day, rare mamas! For more support and sisterhood, check out Nikki's new book, Rare Mamas: Empowering Strategies for Navigating Your Child's Rare Disease. Order the book today at the links below: Amazon Apple Books Barnes & Noble Bookshop.org Books-A-Million IndieBound Indigo Kobo Porchlight Book Info: 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 55 Plugging Into the Rare Community   In this special Rare Disease Day episode of Rare Mamas Rising, Nikki McIntosh reads the chapter "Plugging Into the Rare Community" from her book Rare Mamas: Empowering Strategies for Navigating Your Child's Rare Disease and reflects on what Rare Disease Day has taught her as a rare disease mom. This heartfelt episode explores the power of the rare disease community, the importance of caregiver support, and why connection among rare moms can change the way we carry even the hardest seasons of rare disease parenting. Whether you are newly navigating a diagnosis or years into your caregiving journey, this episode offers encouragement, validation, and a reminder that no rare mama was meant to do this alone.   Links & Resources Mentioned: For more info on Rare Disease Day, check out: https://www.rarediseaseday.org https://rarediseases.org   For more support and sisterhood, check out Nikki's new book, Rare Mamas: Empowering Strategies for Navigating Your Child's Rare Disease. Order the book today at the links below: Amazon Apple Books Barnes & Noble Bookshop.org Books-A-Million IndieBound Indigo Kobo Porchlight Book Info: 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 54 Hoping Through the Holidays   Christmas is the season of hope. But hope can be complicated for rare disease parents navigating exhaustion, medical uncertainty, chronic stress, and the ache of unanswered prayers. In this episode of Rare Mamas Rising, we explore what hope really looks like for rare disease parents and caregivers during a season that can feel both beautiful and painfully complicated. This episode gently unpacks the realities of hoping in the hard: hope in the waiting, hope after disappointment, hope when you're exhausted, and hope when you're scared to try again. It offers reflections on why hope is an action we choose, how it keeps us moving in the world of medical parenting, and the surprising ways hope can transform us even before our circumstances change. For every rare caregiver navigating uncertainty or heaviness this time of year, this conversation creates space to reconnect with hope.   Links & Resources Mentioned: For more thoughts on Hope, check out Nikki's new book, Rare Mamas: Empowering Strategies for Navigating Your Child's Rare Disease. Order the book today at the links below: Amazon Apple Books Barnes & Noble Bookshop.org Books-A-Million IndieBound Indigo Kobo Porchlight Book Info: 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]

RARE MAMAS RISING- EPISODE 53 Rhythms of Rising and Recovering As rare mamas, we're no strangers to effort. We plan, advocate, and persevere through every season. The calm seasons are fleeting, the storms arrive unannounced, and balance often feels impossible. So maybe it's time to stop waiting for life to slow down, and instead, learn to build recovery into the cracks and spaces of our real lives. In this episode, Nikki explores what it means to rest between the rising, to create a rhythm of recovery within the chaos, to stop pushing through every warning sign from our bodies, and to begin listening to what we truly need. Because maybe the goal was never perfect balance. Maybe it's learning to breathe in the middle of the unbalanced—to stop waiting for life to change, and instead, change how we move through it.   Links & Resources Mentioned: Order the Rare Mamas book today at the links below: Amazon Apple Books Barnes & Noble Bookshop.org Books-A-Million IndieBound Indigo Kobo Porchlight   Book Info: 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 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: Amazon Apple Books Barnes & Noble Bookshop.org Books-A-Million IndieBound Indigo Kobo Porchlight 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   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 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. In this episode, Nikki shares: 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]