Two Rare Mama Bears

Having a sibling with special needs is a reality many for many children, impacting the whole family. It’s a family dynamic that can both strengthen and stress even the tightest of bonds. Siblings of someone with special needs are more empathetic, more responsible and more resilient - but frequently they shoulder tremendous burdens that are not often or easily discussed. In this episode Matty interviews Miranda (age 7) and Joshua (age 3) and Megan interviews Ethan (age 11) about their experiences as siblings of Matthew (age 5) and Lilly (age 7), who live with Congenital Muscular Dystrophy.

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As a leader in the fashion industry for 20+ years, in 2014 Mindy Scheier found herself on a journey discovering the huge need for adaptive clothing when her then 8 year son, Oliver, expressed the daily act of getting dressed and buttoning jeans was too hard and setting him apart from his peers. Oliver was diagnosed a few years prior with a rare form of congenital muscular dystrophy, SEPN1 related myopathy.

This episode covers the Scheier family’s diagnostic journey, Mindy's discovery into the world of adaptive clothing, and the formation of the Runway of Dreams Foundation. This mama bear on a mission shares how she set out to change and influence the fashion industry, inspire via TED talks, and impact brand names such as: Tommy Adaptive | Tommy Hilfiger USA, Target Adaptive, Zappos Adaptive, and Nike FlyEase.

Runway of Dreams aims to be the authority on incorporating modifications to mainstream clothing for the differently-abled community, changing the landscape of fashion as being ALL-INCLUSIVE.

Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabears

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Twitter: RunwayOfDreams1

As we start off a new year, it’s time to evaluate our capacity to prepare for disruptions, recover from shocks and stresses, and adapt and grow from disruptive experiences. This episode reviews tips Matty & Megan recently learned in a resilience workshop on what we can do to strengthen our resilience muscles, so we can flex them when we find ourselves down the metaphorical “hole” of special needs parenting.

Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabears

If you don’t laugh - you’ll cry….real life stories that you wouldn’t believe actually happened to one special needs family! This episode introduces us to the Vondrak family (Kennedi - age 14, Jaycie - age 12, and Bentley - age 9) from Northwest Iowa, who have had MORE than their fair share of difficult situations to deal with, including Spinal Muscular Atrophy - Type 2 diagnoses for all three daughters. The one constant for the Vondrak’s when dealing with too many pressures and serious moments, is Kari and Jesse’s ability to find humor in their experiences, even if sometimes it occurs between their tears.

With the holiday season upon us, Matty and Megan discuss potential stressors and challenges that families with special needs may encounter: dietary, sensory, accessibility, routine, infection control, etc. Additionally, Matty and Megan do a quick 6 month check in since the start of their podcast and a quick rapid fire q&a of each other.

Two Rare Mama Bears can be found on Facebook, Instagram and Twitter: @2raremamabears

Have you taken an assessment of what your defining moments are in your life and how you got there? What frames the efforts you chose to put towards your time, treasure, and talents? In this episode, Matty and Megan outline occurrences in their CMD journeys that strung together shown them how these young people have taught us all lessons that it take most adults a lifetime to learn.

Meet Emmett, an 18 month old Montana superhero! His superhero powers are discovered when you enter his secret world. Emmett lives with Walker Warburg Syndrome (WWS), which is a phenotype presentation of Alpha-Dystroglycanopathy (aDG) - one of the 5 congenital muscular dystrophy (CMD) subtypes. Emmett’s sweet mama, Kara, shares a glimpse into their everyday life and gives us the gift of letting us in on Emmett’s superhero secret.

Would you like your voice to be heard by your elected officials? Think that you may like to know more about advocacy? This episode is a quick crash course into EveryLife Foundation, Rare Disease Legislative Advocates, and Rare Disease Week on Capitol Hill. Lindsey Cundiff, Associate Director of Patient Engagement for EveryLife Foundation shares with us the ins and outs of these organizations and how they design events and resources to support the advocacy of all rare disease patients and organizations - by working collectively, our many voices join together to ensure that rare patients are heard in state and federal government.

Two of our youngest (and most discussed) guests, Lilly & Matthew, kick this episode off for us! In episode 010 “The Hole”, you heard Matty and Megan share their impression of special needs family falling into a whole getting to diagnosis and treatment, and then trying to access resources designed to help them out of that hole. Episode 016 explores Matty and Megan in a bit of a “hole” feeling again and noticing how it seems to be a cycle that special needs family go through occasionally.

At 17 years old, this extraordinary young man is living life as an elite triathlete, a big thinker, and an individual with a rare disease. Motivated by how exercise improved his symptoms of his Hypokalemic Periodic Paralysis (HKPP), Gabriel “Gabe” Low discovered his drive to be a competitive athlete. Gabe’s story will amaze you as you learn about his ambition to combine cycling alongside an awareness campaign for rare diseases. We’re sure you’ll be inspired, motivated and amazed after listening to this episode.