Rare Mamas Rising: A Rare Disease Mom Podcast

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, but Megan didn't think much about her differences until she became the mother of a child with special needs. When Megan found herself having to answer questi...

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. We are doing all the typical things like getting school supplies and clothing ready to go, but we're also communicating with case carriers and ensuring servic...

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 months, and reset your path for the remainder of the year. This episode hopes to serve as a thought starter, a jumping-off point, and a catalyst to help you ref...

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 karate, and a mother of two, was forced to leave a twenty-year career in dentistry and stop the practice of karate due to Stiff Person Syndrome. Today, Zier is the...

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 talking about motherhood and sharing a message that's been on her heart. Sometimes in rare motherhood, there are seasons that feel like long winters. Nikki off...

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 Medicine at the University of Washington & Rare Mama Dr. Kim Aldinger   Dr. Aldinger is a Principal Investigator in the Center for Integrative Brain Research at S...

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 on the compelling conversations in the previous episodes. From a rare memoir author to rare disease TV show creators and writers, a rare podcaster, rare dise...

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 child Lucas was diagnosed with the rare disease Menkes Syndrome. After adjusting his expectations of what raising a child might look like, Daniel began telling Lucas...

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 has received two pints of blood every fourteen days. Today, Maria is a mother, a real estate professional, and a fierce Thalassemia advocate speaking around t...

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 information known about the disorder, Melissa Hioco found an online STXBP1 parent community and got involved. Today, she is a founding member and the Director o...

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 disabilities, an advocate, and a singer. In 2015, Tameka's daughter Evely was born and diagnosed with bilateral anophthalmia , a rare condition causing her t...

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 only thirty-seven known cases worldwide. A true fighter in every sense of the word, Amanda shares how she uses her background and training to help her daught...

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 severe mutation of the FOXG1 gene. The FOXG1 Research Foundation is not only accelerating research to cure FOXG1 Syndrome and brain disorders but also driv...

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 over the past decade. Check out this episode to gain insight into the dad perspective, or share this episode with a rare dad in your life for a little Father's...

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...

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 miracul...

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...

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...

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...

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 leav...

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,...

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 s...

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 missi...