Rare Mamas Rising

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 info@raremamas.com   PODCAST INFO podcast@raremamas.com  

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 info@raremamas.com     PODCAST INFO podcast@raremamas.com 

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 info@raremamas.com   PODCAST INFO podcast@raremamas.com

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 nikki@raremamas.com to get involved   CONNECT WITH NIKKI   Facebook https://www.facebook.com/RareMamas1/ Instagram https://www.instagram.com/Rare_Mamas/ Website https://raremamas.com/ Email info@raremamas.com   PODCAST INFO podcast@raremamas.com

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 info@raremamas.com     PODCAST INFO podcast@raremamas.com    

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 info@raremamas.com   PODCAST INFO podcast@raremamas.com

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 info@raremamas.com   PODCAST INFO podcast@raremamas.com    

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 info@raremamas.com     PODCAST INFO podcast@raremamas.com    

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 info@raremamas.com PODCAST INFO podcast@raremamas.com  

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 info@raremamas.com   PODCAST INFO podcast@raremamas.com

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 info@raremamas.com   PODCAST INFO podcast@raremamas.com

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 info@raremamas.com   PODCAST INFO podcast@raremamas.com

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 info@raremamas.com   PODCAST INQUIRIES podcast@raremamas.com

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 info@raremamas.com   PODCAST INQUIRIES podcast@raremamas.com

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 info@raremamas.com   PODCAST INQUIRIES podcast@raremamas.com

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 info@raremamas.com

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 info@raremamas.com

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 National Organization for Rare Disorders (NORD) EveryLife Foundation Global Genes Rare Disease Legislative Advocates (RDLA) Rare Action Network CONNECT WITH NIKKI   Facebook https://www.facebook.com/RareMamas1/ Instagram https://www.instagram.com/Rare_Mamas/ Website https://raremamas.com/ Email info@raremamas.com

RARE MAMAS RISING- EPISODE 35 Charting the Unknown: Navigating the New Year Amid Uncertainty with Rare Mama Nikki McIntosh The beginning of a new year provides a prime opportunity to establish goals, set intentions, and chart a course for the months ahead. However, the unpredictability of rare diseases can derail even the most thought-out plans. Navigating this delicate balance between planning and flexibility is a challenge. Join Nikki in this episode as she delves into strategies for navigating the uncharted territories of the new year. Through proactive approaches, practical tips, and personal stories, Nikki equips rare mamas to embrace uncertainties, allowing them to step into the new year with flexibility and openness. CONNECT WITH NIKKI   Facebook https://www.facebook.com/RareMamas1/ Instagram https://www.instagram.com/Rare_Mamas/ Website https://raremamas.com/ Email info@raremamas.com

RARE MAMAS RISING- EPISODE 34 Navigating Grief and Healing with Normal Broken Author Kelly Cervantes     Kelly Cervantes is the author of Normal Broken: The Grief Companion for When it's Time to Heal But You're Not Sure You Want To. Kelly is an award-winning writer, speaker, and advocate best known for her blog Inchstones, where she shared the stress, love, and joy that came with parenting her medically complex daughter, Adelaide. Since Adelaide's passing, Kelly has continued to write candidly about her arduous and, at times, contradictory grief journey. She has been published in the Chicago Tribune, the Chicago Sun-Times, and Cosmopolitan, as well as quoted in the New York Times, CNN, and People. She is the current board chair for the nonprofit CURE Epilepsy and also hosts their biweekly podcast, Seizing Life, where she interviews scientists, doctors, and individuals affected by epilepsy. Kelly resides in Maplewood, NJ, with her husband, Miguel Cervantes currently starring in Hamilton on Broadway, their children, and their dogs. In this episode, Kelly holds our hands and compassionately guides us through grief and healing, allowing us to feel normal broken together.     EPISODE HIGHLIGHTS Background about Kelly and her family  The journey to writing Normal Broken, and the impact of writing through pain Navigating anticipatory grief while parenting a medically complex child Managing comparative and competitive grief What to do when you're struggling to feel gratitude Communicating your needs to your partner and understanding your partner's needs when they are different than your own Taking steps to find and build a community Kelly's learnings and advice for other rare mamas   LINKS   Normal Broken NormalBroken.com   Kelly Cervantes Kellycervantes.com Facebook.com/kellygc411 Instagram.com/kellygc411   Cure Epilepsy https://www.cureepilepsy.org/       CONNECT WITH NIKKI   Website https://raremamas.com/ Instagram https://www.instagram.com/Rare_Mamas/ Email info@raremamas.com