MDA Quest Podcast

Judith (Judy) Heumann is a lifelong advocate for the rights of disabled people and is often referred to as "the MLK of the disability civil rights movement". She has played a role in the development and implementation of major legislation including the IDEA, Section 504, the Americans with Disability Act and the Convention on the Rights of Persons with Disabilities. Judy has published multiple boo...

Parenting is one of the toughest jobs on the planet. It is also one of the best, most rewarding, incredible things you can do. In this episode, we invite you to listen to our coffee-talk about three personal journeys through motherhood with a neuromuscular disease. Each of our stories is different, and we hope that each will bring you joy and encouragement. Please know, this conversation is specif...

Today in the spirit of Valentine's Day, we are talking with two married couples about their dating and eventual marriage. Under most circumstances, dating and marriage can be full of highs and lows, and when you throw a disability into the equation, there can be some unique challenges for the couple to work through. Today we're going to benefit from all the wisdom these two couples have to share....

Having a sibling can be amazing. Siblings can be built-in playmates and best-friends, your partner in crime and a constant in an individual's life. Siblings represent deep-roots and home for the entire life journey they embark on together. But sibling relationships are not without complications. In this episode, we are talking to sibling pairs where one of the siblings has a neuromuscular conditio...

Need a last-minute gift-giving idea? You’re in luck because in this episode, we are talking all about fun do-it-yourself crafts and gift-giving, recipes and more. We have two guests joining us who are known for their art, entertaining and baking skills and we are all sharing ideas for how to make do-it-yourself easy AND accessible. Campfire Bars Recipe by Therese Gabriel Homemade Holiday Gifts Tra...

The holidays can be a fun, festive time of year. There are decorations, music, parties, food...but for many, the holidays can be an incredibly stressful time. And when dealing with an illness or disability, like a neuromuscular disease, while the holidays can still be lots of fun, there are also additional circumstances that can increase our stress. In this episode, we will tackle some of these di...

This month, we continue our series on “Access to the World,” with a look at architecture. In this episode, Mindy speaks with Paul Robertson who lives with Limb Girdle Muscular Dystrophy, type 2J. Paul recently built a new home to suit his changing mobility and joins us to discuss the building process and what he did to make his new home accessible. Transcript Guests: 1. Paul Robertson is a busines...

This month, we continue our series on "Access to the World," with a look at architecture. In this episode, Mindy speaks with Dominic Marinelli. Dominic is talking all about building codes in commercial architecture to make buildings accessible, how those codes change and evolve year to year, and how we can all do our part to make buildings more accessible. Transcript Guests:   1. Dominic Marinelli...

October is Disability Employment Awareness Month, so on this episode of Quest Podcast, we’re exploring the world of employment for individuals with disabilities. Despite a huge talent-pool of candidates in the U.S., only approximately 29% of individuals with disabilities hold positions in the current workforce. In this conversation, we’re discussing why that is, what is being done to improve that...

 This next episode in our "Access to the World" series focuses on hotel accommodations for individuals with disabilities. accessibleGO is a travel website, specializing in accommodations for disabled travelers. During this conversation we discuss the challenges involved in making travel arrangements for those with special accessibility needs and how accessibleGo is helping to solve the problem to...

The second in our "Access to the World" series, this episode focuses on the unique challenges air travel presents to individuals who use wheelchairs. We will discuss the current state of air travel and the inconvenience, and emotional strain it causes travelers who use wheelchairs. Then, we turn the tables to talk about solutions. The work that is being done around legislation and aircraft crash-t...

For individuals with NMD, or any disability, travel is complicated by all kinds of logistical issues and accessibility barriers. There are places and experiences that are "off-limits" to individuals who use wheelchairs because certain destinations just aren’t accessible, or accessible enough. Kevan and friends have broken through those barriers by creating a nonprofit organization that developed a...

For anyone with NMD or other disabilities, getting from one place to another can be a challenge. On today's episode of Quest Podcast, we will be discussing the various options in accessible ground transportation, from driving adapted vehicles, to riding on buses and trains. We'll examine the various modes of transportation, what systems have been designed well and which ones...maybe leave a little...

For anyone with NMD, the journey begins with a diagnosis…a name for the symptoms that are manifesting. In this episode, we will dive into that conversation from multiple perspectives - an individual diagnosed in infancy, an individual diagnosed in early adulthood and a parent who went on the journey as an advocate for their child. We will talk about each of their stories and the path they took to...