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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

50:21

Navigating Grief and Healing with Normal Broken...

Rare Mamas Rising: A Rare Disease Mom Podcast ·

2023/12/13

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 medically complex daughter, Adelaide. Since Adelaide's passing, Kelly has continued to write candidly

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28:47

A Rare Adoption Story with Rare Mama Monica Poynter

Rare Mamas Rising: A Rare Disease Mom Podcast ·

2023/11/15

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 family history of the condition, their biological son Tag's diagnosis in 2014 came as a complete shock

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14:41

10 Minutes with Rare Mama Teri Furey - Larsen...

Rare Mamas Rising: A Rare Disease Mom Podcast ·

2023/10/18

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 showing up for Beau, how she’s learned to accept a life of uncertainty, and how she loves watching how

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38:20

Demystifying Differences with Author, Speaker, and...

Rare Mamas Rising: A Rare Disease Mom Podcast ·

2023/09/13

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 questions about his differences, it sparked a passion in her to teach children the ways in which everyone is

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17:09

Back-to-School Tips with Rare Mama Nikki McIntosh

Rare Mamas Rising: A Rare Disease Mom Podcast ·

2023/08/16

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 services and supports are in place. Over the years, Nikki’s figured out a few systems to help rare families

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15:02

Mid-Year Reset with Rare Mama Nikki McIntosh

Rare Mamas Rising: A Rare Disease Mom Podcast ·

2023/07/19

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 reflect on where you’ve been and recommit to where you’re going! CONNECT WITH NIKKI Facebook

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39:25

A Moving Mission with The Stiff Person Syndrome...

Rare Mamas Rising: A Rare Disease Mom Podcast ·

2023/06/21

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 founder and president of The Stiff Person Syndrome Research Foundation (SPSRF), which she

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09:36

Mother’s Day Episode - Enduring, Planting, and...

Rare Mamas Rising: A Rare Disease Mom Podcast ·

2023/05/10

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 offers a few thoughts on how to approach these seasons as we await spring. Don’t miss this episode–it’s

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58:32

Driving Discoveries with Principal Investigator at...

Rare Mamas Rising: A Rare Disease Mom Podcast ·

2023/04/26

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 Seattle Children’s Research Institute and an Assistant Professor in the Department of Pediatrics,

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16:28

Rare Mamas Rising Reflections with Rare Mamas®...

Rare Mamas Rising: A Rare Disease Mom Podcast ·

2023/03/15

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 disease organization founders and directors, a nurse, a nutrition coach, a wellness expert, a social

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34:01

Charging the Rare Community with The Disorder Channel...

Rare Mamas Rising: A Rare Disease Mom Podcast ·

2023/02/15

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’s story with a short documentary film. That film led to Daniel Co-founding DISORDER: The Rare

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38:15

Modeling Rare Advocacy with Thalassemia Advocate and...

Rare Mamas Rising: A Rare Disease Mom Podcast ·

2023/01/18

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 the world and inspiring patients to live their best lives. Maria is a published author in the American

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38:59

Finding Meaning and Purpose with STXBP1 Foundation...

Rare Mamas Rising: A Rare Disease Mom Podcast ·

2022/12/07

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 of Development for the STXBP1 Foundation, a parent-led nonprofit leading the charge for a cure for STXBP1

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42:00

Lifting Her Voice and Envisioning Change with Through...

Rare Mamas Rising: A Rare Disease Mom Podcast ·

2022/11/16

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 to be born without eyes. Evely has received several diagnoses since birth, though her underlying rare

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14:59

Ten Minutes With A Rare Mama- Amanda Brundage, UFC...

Rare Mamas Rising: A Rare Disease Mom Podcast ·

2022/10/05

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 daughter in a fight she never expected. Amanda’s learned to trust the process, and through it, she’s found a

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28:03

A Big Reason to Be Here with FOXG1 Research...

Rare Mamas Rising: A Rare Disease Mom Podcast ·

2022/09/07

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 driving change in the rare disease landscape. Bringing more than two decades of experience in media and

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54:30

Elevating Our Advocacy with Rare Action Network State...

Rare Mamas Rising: A Rare Disease Mom Podcast ·

2022/08/03

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 Danyelle Sun. Danyelle has served Cure SMA as a board member and Wisconsin chapter officer, building community and championing a better future for people living with SMA. Currently, she works as the Cure SMA Social Work Manager, providing support to families,

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39:41

Turning Pain into Purpose with The Avalon Foundation...

Rare Mamas Rising: A Rare Disease Mom Podcast ·

2022/07/13

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 with a degree in psychology. When Avalon was getting a crucial yet incredibly painful treatment for the rare condition Hypophosphatasia, Avalon’s grandmother gave her a pain box to support her through treatment. Avalon strongly felt that supporting children

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13:37

Father's Day - Ten Minutes With A Rare Dad- Tony...

Rare Mamas Rising: A Rare Disease Mom Podcast ·

2022/06/15

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 Day boost! Happy Father’s Day to all the rad, rare dads! CONNECT WITH NIKKI Facebook

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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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