Nikki McIntosh

Rare Mamas Rising: A Rare Disease Mom Podcast

Kids EN ↓ 57 episodes

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, uplifted, and empowered. We rise stronger when we rise together—let's rise!

Author

Nikki McIntosh

Episodes

Raising Awareness with SMA Mom and Cure SMA Advisory Committee Member Mary McHale 04.08.2021 33:24

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 t...

Episode 005 - Lighting the Way With Once Upon A Gene Podcast Host and Rare Mom Effie Parks 07.07.2021 45:14

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. Ef...

Best Case Scenarios with Special Education Community Advisory Committee Chair; Rare Mama Rachel Niemeyer-Sutherland 02.06.2021 47:14

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 recei...

Happy, But Different with Boston Children's Epilepsy Center Coordinator & Rare Mom Colleen Gagnon 03.05.2021 40:14

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 wi...

Mother's Day Episode with A Rare Mama's Mama 28.04.2021 14:05

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 yea...

Trailer - Rare Mamas Rising 20.04.2021 1:41

The Sunshine in the Storm with Rare Cancer Mom & Advocate Stacey Walthers Naffah 20.04.2021 28:08

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...