Rhythms of Rising and Recovering
Rare Mamas Rising: A Rare Disease Podcast
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...
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Rare Mamas Book Release Day + A Special Reading from the Introduction
Rare Mamas Rising: A Rare Disease Podcast
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...
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The Making of Rare Mamas: Reflections on Writing and Rare Parenting
Rare Mamas Rising: A Rare Disease Podcast
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...
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Introducing Rare Mamas: A Rare Disease Parenting Book by Nikki McIntosh
Rare Mamas Rising: A Rare Disease Podcast
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....
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Holding On To Our Identity
Rare Mamas Rising: A Rare Disease Podcast
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...
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Spring Cleaning - Letting Go of Things that No Longer Serve Us
Rare Mamas Rising: A Rare Disease Podcast
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...
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EP 47 - Tackling Therapy Burnout
Rare Mamas Rising: A Rare Disease Podcast
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...
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Sharing Our Stories to Create Change
Rare Mamas Rising: A Rare Disease 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,...
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Building Endurance in the New Year
Rare Mamas Rising: A Rare Disease Podcast
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...
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Holidaying Your Way
Rare Mamas Rising: A Rare Disease Podcast
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,...
info_outlineRARE 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
National Organization for Rare Disorders (NORD)
Rare Disease Legislative Advocates (RDLA)
CONNECT WITH NIKKI
https://www.facebook.com/RareMamas1/