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PODCAST

Rare Mamas Rising: A Rare Disease Mom Podcast

Rare Mamas Rising is a podcast for mothers of children with rare diseases to find strategies, strength, support, and sisterhood! Hosted by Nikki McIntosh, founder of Rare Mamas, author of the book Rare Mamas: Empowering Strategies for Navigating Your Child"s Rare Disease, and a rare mom herself, each episode offers heartfelt reflections, practical tools, and empowering strategies to help you rise to the call of rare disease parenting. Catch an episode of Rare Mamas Rising and walk away encouraged,

kids & family parenting

All Episodes

47:53

Motherhood Reflections - Exploring Our Journeys and...

Rare Mamas Rising: A Rare Disease Mom Podcast ·

2022/05/04

RARE MAMAS RISING- EPISODE 15 Motherhood Reflections: Exploring Our Journeys & Fostering Emotional Wellness For Ourselves & Our Families With NDF Emotional Wellness Director Carol Gelbard In honor of Mother’s Day, this special episode invites rare mamas to reflect on our motherhood journeys and explore our emotional wellness. Guest Carol Gelbard stewards these explorations and provides insightful techniques and strategies from her 20+ years of experience performing individual, family, and group

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29:17

A North Star In A Rare Universe with Cure Founder and...

Rare Mamas Rising: A Rare Disease Mom Podcast ·

2022/04/13

RARE MAMAS RISING- EPISODE 014 A North Star in a Rare Universe with CURE Founder and Rare Mom Caroline Cheung-Yiu For over 12 years, a cruel and debilitating disease slowly robbed Caroline’s son Alex of his abilities. Countless medical and genetic tests and some of the best physicians, scientists, and researchers in the world were perplexed by Alex’s condition. Then in 2018, through miraculous intervention, Alex’s genetic data was reanalyzed, and he was found to have a newly discovered, rare,

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15:45

10 Minutes with A Rare Mama- Catherine Oh-Congenital...

Rare Mamas Rising: A Rare Disease Mom Podcast ·

2022/03/16

RARE MAMAS RISING- EPISODE 013 10 Minutes with a Rare Mama Catherine Oh - Congenital Nephrotic Syndrome Mom Introducing "10 Minutes with a Rare Mama!" "10 Minutes with a Rare Mama" is a bite-size serving of all the warm, nourishing goodness you love about Rare Mamas Rising—learning from each other, uplifting one another, and walking away feeling empowered. Each episode is filled with hearty ingredients to help you grow! But let's be honest, sometimes mama ain't got time for a full meal

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39:43

The Passion Behind - Behind the Mystery TV Show with...

Rare Mamas Rising: A Rare Disease Mom Podcast ·

2022/02/16

RARE MAMAS RISING- EPISODE 012 The Passion Behind, Behind the Mystery with Co-Creator & Rare Mom Carri Levy & Writer/Producer Brittany Cocilova Carri Levy had been chasing a diagnosis for her daughter Ilana for years when she found The National Organization for Rare Disorders (NORD) and learned over 7,000 rare diseases exist. Carri’s colleague Molly Mager’s life was also impacted by a rare disease when her twin brother was diagnosed with Acinar Cell Cystadenoma, a rare pancreatic tumor. On a

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45:23

Shining A Light on Undiagnosed Illnesses with Chief...

Rare Mamas Rising: A Rare Disease Mom Podcast ·

2022/01/05

RARE MAMAS RISING- EPISODE 11 Shining a Light On Undiagnosed Illnesses with Chief Clinical Officer Neurobehavioral Institute, Filmmaker, and Rare Mom Dr. Katia Mortiz Dr. Katia Moritz, a licensed psychologist Board Certified in Cognitive and Behavioral Psychology. She is the co-founder and Chief Clinical Officer of the Neurobehavioral Institute, where she specializes in treating Severe Anxiety, Obsessive-Compulsive and Related Disorders, and Autism Spectrum Disorders. Dr. Moritz is also a rare

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11:27

Holiday How-Tos for Rare Mamas

Rare Mamas Rising: A Rare Disease Mom Podcast ·

2021/12/01

RARE MAMAS RISING- EPISODE 10 The Holiday Episode: Holiday How-Tos for Rare Mamas with Host Nikki McIntosh The holidays can be a magical time of year filled with celebrations, traditions, and meaning. But the "Most Wonderful Time of the Year" can also come with disrupted schedules, heightened expectations, and overstimulation. Add in the realities of rare-disease parenting, and it can leave us feeling overwhelmed and wiped out. Over time, I've learned to "holiday" a little differently so

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38:29

Nutrition Coaching for Rare Mamas with Dietitian...

Rare Mamas Rising: A Rare Disease Mom Podcast ·

2021/11/03

RARE MAMAS RISING- EPISODE 009 Nutrition Coaching for Rare Mamas with Dietitian Nutritionist and Rare Mom Chardell Buchanan Chardell Buchanan is a Registered Dietitian Nutritionist who offers nutrition coaching to moms of children with disabilities. At the age of two and a half, Chardell's son, Ben, was diagnosed with a rare genetic disorder called Phelan-McDermid Syndrome. After Ben's diagnosis, her life was busy, and survival was the goal. Soon she realized not prioritizing her own health was

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44:22

The Power of Storytelling in Community Building with...

Rare Mamas Rising: A Rare Disease Mom Podcast ·

2021/10/13

RARE MAMAS RISING- EPISODE 8 The Power of Storytelling in Community Building with Loving Large Author Patti M. Hall Patti M. Hall is a writer, collaborator, book coach, and founder of the Story House Mastermind. She is also the author of Loving Large: a mother’s rare disease memoir. Patti’s life was pitched into an abyss of uncertainty when a golf ball-sized tumor was discovered in her teenage son’s head, and he was diagnosed with gigantism, a disease of both legend and stigma. After scrambling to

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36:51

Changing Lives One Child at a Time with Team Joseph...

Rare Mamas Rising: A Rare Disease Mom Podcast ·

2021/09/01

RARE MAMAS RISING- EPISODE 007 Changing Lives One Child at a Time with Team Joseph CEO & Duchenne Mom Marissa Penrod When Marissa’s five-year-old son Joseph was diagnosed with Duchenne muscular dystrophy, she made a silent promise that she would fight for him and channel her grief into something that would help him. Today, she is the CEO and founder of Team Joseph, an organization with a mission to fund research to find a cure for Duchenne muscular dystrophy and support families with

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33:24

Raising Awareness with SMA Mom and Cure SMA Advisory...

Rare Mamas Rising: A Rare Disease Mom Podcast ·

2021/08/04

RARE MAMAS RISING- EPISODE 006 Raising Awareness with Cure SMA Advisory Committee Member & SMA Mom Advocate Mary McHale In this special spinal muscular atrophy (SMA) awareness episode, SMA mom Mary McHale shares learnings from her 20+ years of being a rare disease parent, awareness builder, fundraiser, and advocate. Mary's son Danny was diagnosed with SMA at six months old, and Mary was told that he wouldn't see his first birthday. Today, Danny is a junior in college. Mary has become a

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45:14

Episode 005 - Lighting the Way With Once Upon A Gene...

Rare Mamas Rising: A Rare Disease Mom Podcast ·

2021/07/07

RARE MAMAS RISING - EPISODE 5 Lighting the Way with Once Upon Gene Podcast Host & Rare Mom Effie Parks When Effie’s son Ford was born with an extremely rare genetic condition called CTNNB1 syndrome, not only did she dive into the world of advocacy, but she launched the Once Upon a Gene podcast, a podcast that explores the world of raising children with disabilities and rare genetic disorders. Effie also hosts the Once Upon a Gene TV show on the Disorder Channel. In this episode, we discuss the

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47:14

Best Case Scenarios with Special Education Community...

Rare Mamas Rising: A Rare Disease Mom Podcast ·

2021/06/02

RARE MAMAS RISING - EPISODE 4 Best Case Scenarios with Special Education Community Advisory Committee Chair & Rare Mama Rachel Niemeyer-Sutherland When Rachel's daughter Sophia was diagnosed with Anophthalmia, the absence of a fully formed eye in her right eye, and Microphthalmia or small eye in her left, Rachel left her opera performing career to care for Sophia. At the age of seven, Sophia received the genetic diagnosis of RARB, a gene alteration in her Retinoic Acid Receptor Beta gene. At that

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40:14

Happy, But Different with Boston Children's Epilepsy...

Rare Mamas Rising: A Rare Disease Mom Podcast ·

2021/05/03

RARE MAMAS RISING - EPISODE 3 Happy, But Different with Boston Children's Epilepsy Center Coordinator & Rare Mom Colleen Gagnon Colleen Gagnon is the Clinical Coordinator of the Epilepsy Center at Boston Children’s Hospital, a nurse, and a rare disease mom herself. Her daughter Niamh was diagnosed with a rare genetic mutation of the brain called Subcortical Band Heterotopia. That diagnosis came with a myriad of other diagnoses, including epilepsy, cerebral palsy, and autism. In this episode, Colleen

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14:05

Mother's Day Episode with A Rare Mama's Mama

Rare Mamas Rising: A Rare Disease Mom Podcast ·

2021/04/28

RARE MAMAS RISING - EPISODE 2 Mother's Day Episode with A Rare Mama's Mama I once heard someone say that motherhood is the hardest thing they've ever done and the greatest privilege they've ever known. In this special Mother's Day episode we'll talk about the hardest things and the greatest privileges. My mother, Myrna Liepold, studied child development, is a trained counselor and she has many years of motherhood experience. She is a truly remarkable woman, a force of strength, a beacon of light and

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01:41

Trailer - Rare Mamas Rising

Rare Mamas Rising: A Rare Disease Mom Podcast ·

2021/04/20

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28:08

The Sunshine in the Storm with Rare Cancer Mom &...

Rare Mamas Rising: A Rare Disease Mom Podcast ·

2021/04/20

RARE MAMAS RISING - EPISODE 001 The Sunshine in the Storm with Rare Cancer Mom & Advocate Stacey Walthers Naffah Stacey Walthers Naffah is a rare mama of a daughter diagnosed with ewing's sarcoma, an extremely rare cancer with fewer than 1000 cases per year worldwide. Stacey has risen up from her daughter's difficult diagnosis to become a childhood cancer advocate and a Director of the Children's Wisconsin Foundation board. EPISODE HIGHLIGHTS How did your rare disease journey start? Our story

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