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...

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...

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...

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...

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 he...

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...

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...

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 invisibl...

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 ins...

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...

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 dia...

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 you...

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 con...

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 gratitud...

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 sensitiv...

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,...

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...

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 tr...

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 matern...

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 Maso...

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 y...

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 an...

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 m...

RARE MAMAS RISING- EPISODE 33  A Rare Adoption Story with Rare Mama Monica Poynter In honor of November National Adoption Awareness Month, guest Monica Poynter shares her incredible rare adoption story. Monica is a proud mother to her sons Tag and Trey and daughter Ophelia. Tag and Trey live with a rare bleeding disorder called hemophilia A, in which the blood does not clot properly. With no famil...

Teri is a hard-working, rare mama fiercely fighting for her son Beau, who has a rare condition called Larsen Syndrome. When Beau was born, all of his major joints were dislocated, and his spine had a curvature. Beau's had eight major surgeries over the last ten years, and Teri and her husband Dan have been advocating for him every step of the way. In this episode, Teri shares how she never stops s...