Beste Rare Mama Bears podcasts (2024)

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054 - Giving Tuesday Now 32:11

4y ago32:11

32:11

Just like November's #GivingTuesday, #GivingTuesdayNow is not exclusively a fundraising day. It's an opportunity for people around the world -- including the Cure CMD community -- to stand together for the causes they believe in. Especially now, we must stay connected! In this episode, we are joined by CMD community member, Mark Beare, who talks ab…

1
053 - STABLE Accounts and COVID-19 stimulus checks 25:59

4y ago25:59

25:59

ABLE Accounts give people with disabilities more independence and financial security by providing tax-free savings plan for disability-related expenses without losing needs-based benefits. We are joined by Nick Hancart, Public Affairs Manager for STABLE for Ohio Treasurer of State. Nick shares with us how individuals can seek out their own state’s …

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052 - I Stay Home For Rare 27:37

4y ago27:37

27:37

Are you living with a rare disease or a parent/caregiver to someone who is? I Stay Home For Rare™ is a campaign and fund for those standing with us in this cause. Levi Gershkowitz joins us to share how through this new platform, together we are raising awareness and funds to help people in this time of heightened need. We stay home in solidarity wi…

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051 - Only the vulnerable will be at risk, your "only" is my everything 31:19

4y ago31:19

31:19

Matty & Megan do a check-in episode after the first week of COVID-19 quarantine at home…. Including a comparison to how this experience is similar to winter for medical complex families, a discussion how we’re handling all the things, and tips for maintaining sanity and caring for mental health while also attempting to safeguard our families’ physi…

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050 - Pro tips from a seasoned NIH visitor with Kierra Sunris 40:04

4y ago40:04

40:04

Door Cure CMD (Matty Manley & Megan Meyer)

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049 - Understanding the basics of drug development - Why it's taking so long and so much money 46:42

4y ago46:42

46:42

Door Cure CMD (Matty Manley & Megan Meyer)

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048 - Caring for the Caregivers - Angel Aid Cares, Cristol O'Loughlin 47:09

4y ago47:09

47:09

Door Cure CMD (Matty Manley & Megan Meyer)

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047 - Rasheera Dopson, Chronicling multiple rare diseases in “Beauty with a Twist” 25:40

4+ y ago25:40

25:40

Door Cure CMD (Matty Manley & Megan Meyer)

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046 - Caitlin Parker, Child Life Specialists 35:50

4+ y ago35:50

35:50

“If a teacher and a nurse combined into a career” - that’s how Caitlin Parker quickly describes her career if she only had 5 seconds to share with you her passion for Child Life mission and vision. Caitlin joined us for episode 039, The White Space, and is with us again to help families like ours, like hers, learn more about family-centered care an…

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045 - Anticipatory Grief, Jennifer Siedman - Courageous Parents Network 42:00

4+ y ago42:00

42:00

Jennifer Siedman, Patient Disease Outreach Coordinator at Courageous Parents Network, joins us to talk on the topic of: Anticipatory Grief - grief that occurs before death or grief that comes with feeling or confronting emotions in advance of an event (loved one’s birthday or anniversary of death). Jennifer and her family know this all too well - i…

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044 - Secondary grief explored, with Lyn & Kate Baier - Nemaline Myopathy community 49:27

4+ y ago49:27

49:27

Greta is a typical 11-year-old 6th grader who wants to go to school dances and hang out at her friends’ homes, but what is different for Greta is that these experiences always include a parent or nurse to accompany her. Greta lives with Nemaline Myopathy, cruises in a power chair, breathes via a tracheostomy, and needs suction to ensure her airway …

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043 - We Carry Kevan… with author, Kevan Chandler 27:47

4+ y ago27:47

27:47

As an introduction to our November book club, Kevan Chandler sat down with us for this coffee house interview about his book “We Carry Kevan”, an inspiring story of camaraderie of six friends taking a journey through Europe without Kevan’s wheelchair - just a backpack to carry him in. Kevan shared with us his motivations to write this book, why he …

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042 - Failure is not an option 20:57

4+ y ago20:57

20:57

A six-year old “honorary astronaut” has his wish come true - to meet a real-life astronaut, Anne McClain, from his hometown, Spokane, Washington. Listen to this podcast episode to learn how the power of a tribe made crowdsourcing work to make a hometown wish happen for Matty’s son in less than 24 hours. Matty shares how her son, Matthew, has become…

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041 - Live BEYOND expectations...not live TO the expectations - Rachel Alvarez 33:09

4+ y ago33:09

33:09

Rachel Alvarez's episode 2 of 4 in her series with us (her 1st episode is ep. 033).... When faced with adversity (and at times, multiple layers of it) individuals can find themselves struggling to see past today while trying to look toward new possibilities. Rachel shares with listeners her personal “success” story that had its share of adversity, …

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040 - Bench to Bedside: Genetic Counseling (Casie Genetti, CGC) 28:03

4+ y ago28:03

28:03

Diligent work performed at a laboratory bench results in advances in the healthcare industry and benefits for the patients it serves. Translation of science to the community through medical interventions delivered to the patient populations is the job of researchers and clinicians - but the job of a Certified Genetic Counselor takes that a step fur…

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039 - The White Space {Caitlin Parker} 46:36

4+ y ago46:36

46:36

Caitlin Parker, a North Carolina mama to a sweet young daughter with LAMA2, does a little bit of a tongue in cheek rant on accessible parking - but also educates listeners on laws that apply to rights users of the accessible spaces. She reminds us of a great quote she found on www.myparkingsign.com: “we prefer the phrase ‘accessible parking’ rather…

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038 - I love it when a plan comes together 23:34

4+ y ago23:34

23:34

Matty and Megan talk about SciFam take-aways and how they were processing information they valued from the conference, and further - how to communicate it to their medical teams. They then chat on strategies they (and listeners) can use to ensure the science is translated through patient communities and then activated to care teams. One action item…

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037 - Pity Party 22:52

4+ y ago22:52

22:52

Matty and Megan find themselves in a bit of a pity party (or stuck in a rut) lately. While occasionally pity parties can comfort you, sometimes you keep asking yourself what did you do to deserve whatever it is that made you so sad in the first place. Through the course of this episode, Matty and Megan have decided to stop apologizing for disabilit…

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036 - Connecting rare disease individuals to researchers - Patient Registry & Sanford CoRDS 32:09

4+ y ago32:09

32:09

Rare disease individuals, including those with neuromuscular disorders, are often longing for a treatment, and hopefully one day… a cure. When planning a clinical trial, it is important for researchers to find enough eligible participants that can be contacted quickly. That’s where a patient registry (or database) is critical - there the patients’ …

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035 - Always on the move - Patrick Veltri 28:47

5y ago28:47

28:47

“Life is about how you react to situations and the decisions you make” - insightful words from Patrick Veltri, a Canisius College student, living in Buffalo, NY who has taken his passion of sports and sports management and turned it into a future career path. Patrick, a Merosin Deficient CMD (LAMA 2) community member, teaches listeners to be positi…

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034 - Don't poke the bear 33:03

5y ago33:03

33:03

There is only so much a Mama Bear can take when she is defending her cubs…. and why do special needs or medically complex parents feel the need to defend? Fight or flight? In this episode, Matty and Megan explore recent experiences that have evoked a full on mama bear response - and also what each are doing to try and discern when to let the mama b…

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033 - Epic Rachel Alvarez, Cure CMD's Executive Director | Rachel’s series - Part 1 28:07

5y ago28:07

28:07

If you are a believer in fate, this episode is for you! Listen as Cure CMD’s Executive Director, Rachel Alvarez, tells her own personal story of how someone coming into her life at the most unexpected time was not by accident (as it turns out), and would actually set the trajectory for her future career path. Rachel explains how and when Cure CMD f…

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032 - Not looking in the rear view mirror, Brendan Sullivan 59:10

5y ago59:10

59:10

Cure CMD’s commitment is to create community for ALL subtypes - we’ve got another story from the dystroglycanopathy, cognitively impaired community. In this episode, Brendan Sullivan shares the story of his two beautiful daughters with Walker-Warburg Syndrome that ultimately took their lives - and then how he’s not looked in the rear view mirror si…

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031 - Wheelchair Rapunzel...Inclusion, self-love & body positivity with Instagram Blogger, Alex Dacy 29:51

5y ago29:51

29:51

Deep dive into learning more about Instagram blogger Alex Dacy, also known as Wheelchair Rapunzel, as she discusses her Spinal Muscular Atrophy (SMA) diagnosis, path to becoming a blogger and social media influencer, as well as how she found herself in the advocacy, inclusion, self-love, and body positivity space while also an apparel merchandiser.…

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030 - NORD Rare Action Network 27:38

5y ago27:38

27:38

The Rare Action Network (RAN), powered by the National Organization for Rare Disorders (NORD), is a grassroots advocacy effort that serves to connect and empower a unified network of individuals and organizations with tools, training and resources to become effective advocates for rare diseases through national and state based initiatives across th…

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029 - If mama ain’t happy…. Respite, taking a break, mom vacation 24:51

5y ago24:51

24:51

The demands of providing 24/7 care can be physically and emotionally draining for caregivers. Without breaks to maintain their own mental and physical wellness, caregivers can experience burnout. With no trusted, competent, caring person to turn to for respite, it can be difficult to maintain a household, run errands, exercise, or even take a showe…

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028 - Local Advocacy, Mary McDirmid 100% In 27:36

5y ago27:36

27:36

"What can I do?" After diagnosis many of us feel lost and helpless. We want to take action but don't know how. We want to feel like we are fighting back in some way. Mary McDirmid is doing just this in the Spokane community. After her daughter Ruthie was diagnosed with Tuberous Sclerosis Complex (TSC) Mary has been 100% in on making Spokane Washing…

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027 - Rawness of a newly diagnosed family 36:42

5y ago36:42

36:42

On a weekly basis we hear of a family that enters the world of a diagnosis they didn’t expect (or maybe they did)....either way, it’s a unique world full of challenges. In this episode we visit with Lindsey Eubanks, as she explores the raw emotions she felt and a few tips for surviving the first year. Their spunky son, Lucas, was diagnosed one year…

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026 - “Dads Take Over” Two Rare Daddy Bears 42:25

5y ago42:25

42:25

When the moms are away in Washington D.C. for Rare Disease Week on Capitol Hill, the dads are going to play…..The dads decided to take over the microphone and record their perspectives of being CMD parents and what it has been like to watch their wives host a podcast. Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabearsListen t…

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025 - Current state of CMD research with Cure CMD Scientific Director 46:58

5y ago46:58

46:58

Leading into Rare Disease Week on Capitol Hill when a team of more than a dozen CMD community members from around the U.S. will advocate for policies, greater funding, and support for CMD...we thought it would be good to check in with Gustavo Dziewczapolski, PhD, Cure CMD Scientific Director, on the current state of CMD research. Quick find for eac…

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024 - Sibling perspectives on CMD 38:56

5y ago38:56

38:56

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 ofte…

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023 - Adaptive clothing...one of our own is revolutionizing the industry in a BIG way! 38:00

5+ y ago38:00

38:00

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 for…

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022 - Building Resilience In The New Year 24:57

5+ y ago24:57

24:57

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 oursel…

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021 - If you don’t laugh, you’ll cry: Kari Vondrak 51:17

5+ y ago51:17

51:17

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 Musc…

1
020 - Holiday stressors & challenges for families with special needs 32:15

5+ y ago32:15

32:15

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 Mam…

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019 - Defining moments 37:12

5+ y ago37:12

37:12

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 tak…

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018 - Super Emmett!...A glimpse into Walker Warburg Syndrome 36:53

5+ y ago36:53

36:53

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 …

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017 - Every life is worth living and every voice is worth being heard! 38:56

5+ y ago38:56

38:56

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 wit…

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016 - Hanging out in the hole 44:54

5+ y ago44:54

44:54

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 …

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015 A teen, a bike, and a mIssion 30:58

5+ y ago30:58

30:58

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 h…

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014 - Beyond The Chair 22:34

5+ y ago22:34

22:34

Andrew “Drew” Shelley, lives the American Dream. He leads a successful life as an engineer and single bachelor. Unhappy with his day job Andrew wants more from his life, so he sets out on a backpacking journey across the world to find out. For Andrew this is a seemingly impossible task. Andrew has Muscular Dystrophy. He weighs a frail 90 lbs and is…

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013 - The Ataxian 25:06

5+ y ago25:06

25:06

“The Ataxian” follows Kyle Bryant, a charismatic Californian with Friedreich’s ataxia, whose ability to walk and speak is impaired, as he tirelessly works to raise awareness and funds for research for the neuromuscular disorder he was diagnosed with at age 17, Friedreich’s ataxia, a little-known, progressive, fatal disease, that has no cure. Its on…

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012 - I'll Push You 25:18

5+ y ago25:18

25:18

I will push you: A Camino Journey of 500 Miles, Two Best Friends and One Wheelchair"I'll Push You: A Real-Life Inspiration" tells the story of two lifelong friends, Justin Skeesuck and Patrick Gray, embarking on an epic, 500-mile-long journey to hike Spain's famed El Camino de Santiago. Hiking this ancient pilgrimage along the vast terrain is chall…

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011 - Back To School 39:53

5+ y ago39:53

39:53

The transition from summer back to school can be overwhelming for everyone, especially families of individuals with disabilities. To help ease the stress and smooth the transition for families, we invited Lani Knutson of Milwaukee, Wisconsin to provide some tips and tricks as both a parent of children with Congenital Muscular Dystrophy, but also as…

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010 - The Hole 23:55

5+ y ago23:55

23:55

The Mama Bears go on a bit of a rant in this episode - listen to see what our reference to “The Hole” is all about. Impartial staff, long waitlists, lack of funds? We have all been there. Some of us may have encountered criticism from those closest to us - the individuals we hope would have our backs. Comments from people who are supposed to suppor…

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009 - Traveling With a Disability 32:31

6y ago32:31

32:31

As individuals with disabilities will find out, standards of accessibility aren’t always universal - it only complicates things to encounter these challenges while traveling! Two Rare Mama Bears discuss travel experiences they have learned from - but are eager to gather useful travel tips from listeners also!…

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008 - Team Stay Strong {Muscle Club Apparel & Love Bug Apparel with Jeff & Nicola Smith} 58:56

6y ago58:56

58:56

The Smith family lets their son, Kaden, set the stage for their outlook on life with congenital muscular dystrophy - which is to stay strong and stay positive. Kaden doesn’t let his diagnosis of LAMA2 slow him down a bit - he keeps his parents on their toes while they are also busy running two successful home businesses, Muscle Club Apparel and Lov…

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007 - Clinical perspective of each CMD subtype, Dr. Reghan Foley 1:14:39

6y ago1:14:39

1:14:39

Get ready to take in a lot of valuable information! In this episode we’re honored to be joined by A. Reghan Foley, MD, Staff Clinician 2 at the National Institutes of Health, Neuromuscular and Neurogenetic Disorders of Childhood Section. Dr. Foley goes in depth on each subtype, what symptoms to look for, how they are typically diagnosed, natural hi…

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006 - Adaptive Driving And Adaptive Vehicles - Simon Cantos 33:34

6y ago33:34

33:34

Thousands of people with mobility limitations have found independence via adaptive driving and adaptive vehicles. In this episode we learn about various vehicle conversion options as well as adaptive driving control alternatives from Simon Cantos, a CMD community member living with Collagen VI CMD (formally known as Ullrich CMD). Simon has extensiv…

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005 Going Outside Of Comfort Zone 25:40

6y ago25:40

25:40

As family or community members within the Congenital Muscular Dystrophy community, resiliency is paramount to thriving in complex and busy lives. In this episode we talk about stress and worry associated with CMD and how we, as a community, can capitalize on those struggles to be resilient and find grace despite adversity - and push to the point of…

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