Nikki McIntosh
Rare Mamas RisingEpisodes
Episodes of Rare Mamas Rising
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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
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 i
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 jo
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 chang
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
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
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 Ta
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
RARE MAMAS RISING- EPISODE 031 Demystifying Differences with Author, Speaker, & Rare Mama Megan DeJarnett Megan is an author, speaker, disability DEI educator, inclusion advocate, and mom to two boys. She was diagnosed with SMA at age two, b
RARE MAMAS RISING- EPISODE 30 Back-to-School Tips with Rare Mama Nikki McIntosh Back-to-school is a busy time for any household, and for families of children with rare diseases, back-to-school may come with even more preparations and to-dos.
RARE MAMAS RISING- EPISODE 29 Mid-Year Reset with Rare Mama Nikki McIntosh Join Nikki for a little mid-year check-in. In this episode, Nikki guides you through a step-by-step process to help you reflect on your “why,” review the last six
RARE MAMAS RISING- EPISODE 28 A Moving Mission with The Stiff Person Syndrome Research Foundation Founder and President Dr. Tara Zier In 2017, Dr. Tara Zier, a graduate of the VCU School of Dentistry and Virginia Tech, a black belt in k
RARE MAMAS RISING- EPISODE 27 Mother’s Day Episode - Enduring, Planting, and Blooming with Rare Mama Nikki McIntosh In honor of Mother’s Day, pull up a chair and grab a cup of tea (or vodka) and join Nikki for a little heart-to-heart. She’s t
RARE MAMAS RISING- EPISODE 26 Driving Discoveries with Principal Investigator at the Center for Integrative Brain Research at Seattle Children’s Research Institute, Assistant Professor in the Department of Pediatrics, Division of Genetic Medici
RARE MAMAS RISING- EPISODE 25 Rare Mamas Rising Reflections with Rare Mamas® Creator, Podcast Host & Rare Mama Nikki McIntosh To mark the 25th episode of the Rare Mamas Rising podcast, Nikki takes over the mic, purposefully pausing to reflect
RARE MAMAS RISING- EPISODE 24 Charging the Rare Community with The Disorder Channel Co-Founder, Global Genes Director of Community Engagement, Menkes Syndrome Advocate & Rare Dad Daniel DeFabio At the age of 12 months, Daniel’s first chil
RARE MAMAS RISING- EPISODE 23 Modeling Rare Advocacy with Thalassemia Advocate & Rare Mama Maria Hadjidemetriou Maria was born with a rare genetic blood disease called Thalassemia, also known as Cooley’s Anemia. Since the age of two, Maria ha
RARE MAMAS RISING- EPISODE 22 Finding Meaning & Purpose with STXBP1 Foundation Director of Development & Rare Mama Melissa Hioco After discovering her son Alex had STXBP1, a rare neuro-developmental disorder, and finding there was little info
Lifting Her Voice and Envisioning Change with Through Evely’s Eyes Founder and Rare Mama Tameka Diaz
RARE MAMAS RISING- EPISODE 21 Lifting Her Voice & Envisioning Change with “Through Evely’s Eyes” Founder & Rare Mama Tameka Diaz Tameka Diaz is a mother of three, a homeschool teacher, a full-time caregiver to her daughter, who has multiple
RARE MAMAS RISING- EPISODE 020 10 Minutes With A Rare Mama- Amanda Brundage, UFC Fighter & ALG13 Mom Amanda is a former UFC fighter, a current self-defense instructor, and mother to Kingsley, who has a rare condition called ALG13 that has o
RARE MAMAS RISING- EPISODE 019 A Big Reason to Be Here with FOXG1 Research Foundation Co-Founder, Executive Director, and Rare Mama- Nicole Johnson Nicole Johnson is the co-founder of the FOXG1 Research Foundation and mother to Josie, who has a
RARE MAMAS RISING- EPISODE 018 Elevating Our Advocacy with Rare Action Network State Ambassador, Cure SMA Social Work Manager, & Rare Mama Danyelle Sun August is spinal muscular atrophy awareness (SMA) month, and in honor, my guest is SMA mom
RARE MAMAS RISING- EPISODE 017 Turning Pain Into Purpose with President of The Avalon Foundation, Hypophosphatasia Advocate, Life Coach & Rare Mama Deb Ayres Deb Ayres, rare mama to Avalon, is a certified life coach and wellness practitioner
RARE MAMAS RISING- EPISODE 16 Father’s Day Episode: 10 Minutes With A Rare Dad- Tony McIntosh, SMA Dad In honor of Father’s Day, Tony McIntosh, father of Miles with spinal muscular atrophy, shares his journey and offers his best learnings ove
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 invite
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