Two Rare Mama Bears

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 about standing together via fundraisers to support our mission. Mark talks about his own experiences fundraising shortly after Bella, his adorable daughter, was diagnosed with LAMA2 CMD. #beareitforbella #CureCMD Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabears

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 ABLE Account, or utilize Ohio’s STABLE Account, which has nationwide enrollment available. Nick also tells us how individuals can utilize their COVID-19 stimulus check into an ABLE/STABLE Account and not have it affect their needs-based financial aid. #STABLEAccount Find more information at www.stableaccount.com Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabears

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 with those protecting the lives of children, family members, and friends living with rare diseases during the COVID-19 pandemic. I Stay Home For Rare has funding to give grants to those in need during COVID-19. Apply and let them know your story and your needs https://www.istayhomeforrare.org/apply #istayhomeforrare #StoryAsMedicine Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabears

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’ physical health. During a time we’ve all heard the news say only the vulnerable will be at risk during this pandemic, we take time for a realization that “only” is everything for some families…. Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabears

Clinical research studies occurring at National Institutes of Health (NIH) utilize people as volunteers and collect data as a means of developing new treats and medications for diseases and conditions. Because there are strict rules of clinical trials, visits to NIH often come with questions regarding what to expect in the overall process. In this episode we chatted with Kierra Sunris, a feisty 15-year-old from North Carolina, who has multiple NIH trips under her belt. In her own words, she is by no means an expert - but did offer some pro tips and key points to keep in mind, especially if you’re visiting NIH for the first time. Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabears

Drug Development is the process by which potential treatments discovered in a research laboratory become approved treatments for affected individuals. In this episode, Rachel Alvarez (Cure CMD Executive Director) explores with us why the process is long and expensive, and never a guaranteed result in bringing a treatment to market. Understandably, the CMD community is eager to see this process accelerated, especially in light of recent press about treatments for other neuromuscular conditions. Rachel is authoring a series of blog posts further expanding on the topic, the first in a series of four posts can be found here: https://bit.ly/2H2KLCg Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabears

“Hardships often prepare ordinary people for an extraordinary destiny”, a quote by C.S. Lewis that resonated with Cristol Barrett O’Loughlin after witnessing the caregiving her family provided while spending decades living with the diagnosis and eventual passing of three brothers with Mucopolysaccharidosis (MPS). As Founder & CEO of ANGEL AID CARES, Cristol is fiercely passionate about providing social, emotional, physical and financial relief to mothers of children with rare disease. ANGEL AID sources Research, Relief and Inspiration for mothers of children with rare diseases through services and strategies to build resilience, community, and promote self-care. Cristol invites you to connect with her on on Facebook, Instagram & Twitter: angelaidcares or via email at: info@angelaidcares.org Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabears

Rasheera Dopson joins us to discuss efforts she has taken to chronicle her life with multiple co-existing rare diseases/chronic health conditions, and the intersection of also identifying as an individual with a disability and an underrepresented minority. In Rasheera’s blog, Beauty with a Twist, she explores all these identities to reach out and connect with others and encourages all of us to let our differences change the world. In addition to blogging, Rasheera also speaks publicly, will soon publish a book, and is starting The Dopson Foundation, for women and girls with disabilities. Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabears

“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 and how we can all utilize that care better for in-patient and outpatient visits. Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabears

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 - in 2014 they lost their teenage son, Ben, to Sanfilippo Syndrome. Since that time, Jennifer has devoted herself to support, guide and strengthen families as they care for a seriously ill child. Jennifer welcomes families in similar situations to reach out to her at: jennifer@courageousparentsnetwork.org Courageous Parents Network can be found online at: www.courageousparentsnetwork.org/ Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabears

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 isn’t blocked. Greta’s parents, Lyn and Kate, were vulnerable and explored with us some thoughts on secondary grief - the struggle that comes with witnessing grief over limitations, barriers, or independence. While they don’t lament on this grief, they keep a “make it work” attitude to navigate life and even give listeners a few tips on how they have built resilience and independence into life with a medically-fragile pre-teen. Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabears

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 chooses to share his story, and what’s on the agenda next for he and his adventure-seeking friends. Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabears

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 an “honorary astronaut” since he got a bi-pap shortly after his diagnosis with congenital muscular dystrophy. Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabears

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, in hopes to give families perspective that not all dreams are lost when a diagnosis occurs. Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabears

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 further to pay attention to the social infrastructure to support those professions. Genetic counselors may interpret genetic testing results in terms the lay public can understand, discuss genetic implications of a diagnosis that a family should be made aware of, and/or help families navigate in research that could get them closer to a treatment or cure. In this episode we hear from Casie Genetti, Certified Genetic Counselor at Boston Children’s Hospital, who applies her knowledge with a group of clinical researchers focused on Congenital Myopathies and Orphan Disease research. Contact Casie at: BeggsLabGC@childrens.harvard.edu Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabears

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 than ‘handicapped parking.’ We encourage you to use language that accurately characterizes the parking, instead of a word that inaccurately characterizes the people who use it”. Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabears

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 that came out of SciFam, fairly universally across the board, was how can we (as a patient community) work to help spread the word of CMD within medical communities to educate those who infrequently come into contact with individuals experiencing neuromuscular conditions. Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabears

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 disability, accommodations, or exceptions - and instead are shifting the tone to positive and having an inclusion mindset. Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabears

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’ clinical and genetic details are collected and made available to researchers. In our first cross podcast (the episode will air on 2 podcast shows), we discuss with Ben Forred CoRDs Cast, a rare disease podcast created by the team at Sanford Research (headquartered in Sioux Falls, SD). On their podcast, you'll hear interviews with patients, patient advocates, physicians, and researchers to raise awareness about the 7,000 rare conditions affecting 1 in 10 people worldwide. Similar to the Congenital Muscle Disease International Registry, Sanford Research also has a rare disease registry, CoRDS, that connects patients and researchers everywhere. Find more information about Sanford Research at: www.sanfordresearch.org/cords Connect with Ben Forred, Director of Clinical Research at Sanford Research, on Twitter at: @SanfordBenF Find Two Rare Mama Bears on Facebook, Instagram & Twitter: @2raremamabears

“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 positive, assertive, and confident about belonging in whatever their end goal is - and usually with this mindset, big things can happen! Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabears

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 bear instinct out and when to let it lie. Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabears

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 formed, when she became involved, what a day/week/month workload looks like for her, and explains a variety of resources she and a volunteer base have put in many countless hours to curate for the CMD community. Enjoy learning from “Epic Rachel” in this first of a 4-part series with her! Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabears

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 since and what he’s doing to make a difference. In terms of cognitive impairment and muscle weakness - these families truly exemplify warrior/mama-dada bears! Together - Brendan is a great example of making ripples of change in congenital muscular dystrophy and while also embracing neurodiversity. Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabears

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. She even discusses a recent mental health challenge. Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabears

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 the United States. A rare disease is defined as one that affects less than 200,000 people and there are currently more than 7,000 rare diseases known to exist. With rare diseases, affecting 25-30 million Americans, RAN and NORD stand for equitable access to timely diagnosis, treatment and care for every person impacted by a rare disease. In this episode we learn about RAN from Cure CMD community member and RAN state ambassador for Ohio, Charlene York, as well as from RAN Grassroots Advocacy Manager, Rose Avellino. Find RAN online at: www.rareaction.org Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabears

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 shower. Respite care provides caregivers with the opportunity for a temporary rest from their caregiving duties. Mom/dad vacations are options for quick getaways to recharge and renew spirit without breaking the bank or sending the other caregiver running for the hills. Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabears

"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 Washington the best it can be for patients and families impacted by rare disease. Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabears

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 ago with Spinal Muscular Atrophy, type 2. Lindsey is on a mission to share Lucas’ story so others can identify with similar experiences - particularly the feelings leading up to and right after diagnosis. Find Lucas and Lindsey on Facebook at: www.facebook.com/lucasbecomingbionic Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabears Listen to this podcast on Apple podcast, Google Play, SoundCloud or Stitcher. Stream online at www.curecmd.org/podcast

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: 2raremamabears Listen to this podcast on Apple podcast, Google Play, SoundCloud or Stitcher. Stream online at www.curecmd.org/podcast

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 each subtype: 1. SEPN1 - 05:45 2. LMNA - 15:05 3. Collagen VI - 21:46 4. LAMA 2 - 31:35 5. a-Dystroglycanopathy - 38:09 Funding portfolio online: https://www.curecmd.org/funding-portfolio Dr. Dziewczapolski received his Master's degree from the University of Buenos Aires, followed by a Ph.D. in Neuropharmacology. Before joining Cure CMD in September 2016, he researched neurological diseases for eighteen years at UC San Diego and the Salk Institute. He is the father of two beautiful daughters, Tatiana and Rafaela, who continue to challenge and inspire him. And to balance his addiction to chocolate, he enjoys surfing and soccer. Find Two Rare Mama Bears on Facebook, Instagram & Twitter: 2raremamabears

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

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 Find Runway of Dreams on Facebook & Instagram: runwayofdreams and on 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.

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 all but confined to a wheelchair. His only aid and odd companion will be his all-terrain monster truck of wheelchairs. Beyond the Chair is a 90 minute documentary that tells the story of one man’s mission to see the world. Quoted from: https://www.friendshipcircle.org/blog/2012/01/13/beyond-the-chair-muscular-dystrophy-new-must-see-documentary/

“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 onset usually occurs in adolescence and lifespan is roughly the age of 30. Kyle says he wants “to do something crazy!” and pulls together a team of four bicyclists — himself (on a recumbent bike) and Sean Baumstark, a friend who also has the disease, along with two friends who happen to be stellar athletes — to take part in Race Across America, an annual competition that covers 3,000 miles in nine days traveling from Oceanside, CA to Annapolis, MD. “The Ataxian” takes its viewers on a journey of inspiration, beauty, even euphoria. But its lasting contribution is in making the world a little more familiar with this disease, and a little less lonely for the families struggling against it.

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 challenging enough for the able-bodied, but these friends show the true test of humanity by physically and mentally pushing each other, as Justin, fighting a neuromuscular disease, would have to be pushed in a wheelchair. While Justin and Patrick face various challenges, they realize the greatest journey will be that of self-discovery, a sense of purpose and love of a community.

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 an educator.

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 support us tend to hurt the most. Frequently, getting services for our special needs loved one means long waiting lists. So who do we turn to? Our equals - similar families who have previously walked in our shoes, who can offer advice and support. These individuals can lend a listening ear because they “get it”.....they quickly become “our tribe”. It is no surprise family members of an individual with a disability will say one of the greatest gifts their loved one has brought them are other families similar to theirs. These connections remind us we are not alone, and that makes all the difference….because we got this!

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!

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 Love Bug Apparel. Jeff & Nicola show us that finding your passions, capitalizing on them and relying your support system will be what gets us through tough times. Their community (Ruston, Louisiana) has rallied behind them to show overwhelming support in the face of difficult times the Smith family has had, full of hospital stays spanning many months and across multiple hospitals. This is a great episode to listen to in order gain a sense of perspective, as well as taking Kaden’s lead on staying positive!

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 history and key points of health that will need monitoring, and potential clinical trials. Quick find for each of the subtypes: SEPN1 - 06:54 LMNA - 20:19 LAMA 2 - 32:05 Collagen VI - 46:30 a-Dystroglycanopathy - 59:42 Dr. Foley is a child neurologist who trained in neuromuscular diseases with Dr. Carsten Bönnemann at the Children’s Hospital of Philadelphia and with Professor Francesco Muntoni at the Dubowitz Neuromuscular Centre, Great Ormond Street Hospital in London. She completed an MD-Research degree focused on the collagen VI-related dystrophies at University College London and then worked at the Children’s University Hospital, Dublin to help expand neuromuscular diagnostic efforts there. Dr. Foley presently works with Dr. Bönnemann at NIH, where she is delighted to be able to be help affected individuals with neuromuscular conditions arrive at genetic diagnoses and journey towards clinical trials.

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 extensively educated himself on adaptive driving and has experience modifying vehicles to meet his needs. As a working professional, independence to travel and access to his work environment is integral in his success. We hope you enjoy learning from Simon’s wealth of knowledge on this topic - sharing information on this resource is one his favorite aspects of being part of the CMD community!

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 where magic happens when you venture outside your comfort zone.

Transition from teenager to college-bound can be hard for any young adult, and frequently is increasingly more challenging for those with a disability to factor in. Angela Maccarrone is a Masters student studying Clinical Mental Health Counseling at Gonzaga University in Spokane, Washington. Angela embodies busy young adult by representing the state of Washington as a MDA Ambassador, maintaining an active social life, and enjoying downtime with a good book, coffee shops, and labrador retrievers (not necessarily in that order). Angela shares with us proactive tips to moving out and being independent - lessons she learned as a young adult with SEPN1-related myopathy.