Two Rare Mama Bears

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.