MDA Quest Podcast
43 episodes - English - Latest episode: about 1 month ago -The official podcast for the Muscular Dystrophy Association
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Episodes
42: Episode 42 - Empowering Individuality with Inclusive Style
June 04, 2024 20:34 - 39 minutes - 36.5 MBIn this Quest Podcast episode, we chat with the Executive Director of Open Style Lab (OSL), a non-profit organization that is on a mission to make style accessible for everyone, regardless of cognitive and physical abilities. Yasmin Keats has devoted her career to the core functions of research, education, and informing the public about inclusive design. She stresses style empowers people, bringing them joy, identity, and self-expression, and inclusion is at the heart of her work. She joins ...
41: Episode 41 - Courage Kindled: A Hero’s Unbreakable Spirit
May 01, 2024 20:59 - 51 minutes - 47.2 MBIn this Quest Podcast episode, we chat with a retired US Army veteran and firefighter, Ken Sutcliffe and his wife, Andi. He has devoted his career to saving lives but now he must also fight for his own after being diagnosed with Amyotrophic lateral sclerosis, or ALS, also known as Lou Gehrig's Disease, He and his wife join us to share their experiences, advice and stories of resilience and positivity. To view a full list of clinical trials, you may be eligible for, go to https://www.mda.org...
40: Episode 40 - Unlocking Access and Inspiring Action with Sophie Morgan
April 19, 2024 20:48 - 49 minutes - 45.1 MBIn this Quest Podcast episode, we chat with world-renowned advocate, entrepreneur, TV personality and producer, Sophie Morgan. She devotes her time and expertise to create inclusive spaces for those with disabilities and deliver advice, inspire action, and make us feel closer together while sharing stories of resilience and positivity. Sophie is a co-founder of Making Space Media, a production company that focuses on increasing representation in TV and film, and a leader in the global disabi...
39: Episode 39 - Behind the Scenes: A Look at the Science and Research for New Treatments
March 14, 2024 22:31 - 50 minutes - 46.1 MBIn this Quest Podcast episode, we chat with geneticist, Dr. Jeffrey Chamberlain and the Chief Research Officer of the Muscular Dystrophy Association, Dr. Sharon Hesterlee. Both have devoted their time and expertise to create and move forward research and treatments for neuromuscular diseases. Their goal is to create successful treatments and eventually a cure for those effect by neuromuscular diseases. These specialists join us to share their experiences, expertise, and advice. Transcript ...
38: Episode 38 - Love Made Simple, with Alexa and Jacqueline Child of Dateability
February 12, 2024 16:56 - 43 minutes - 39.5 MBIn this Quest Podcast episode, we chat with the founders of Dateability, a dating app geared towards individuals with disabilities and chronic illnesses. Alexa and Jacqueline Child have devoted their time to create a safe and accepting space that allows individuals to create meaningful connections. Their goal is to make love accessible for everyone. These ladies join us to share their experiences, expertise, and advice. Transcript Guests: Alexa Child, co-founder of Dateability, graduated...
37: Episode 37 - How to find Meaning and Fulfillment with Isaac Banks
January 18, 2024 00:33 - 54 minutes - 49.8 MBIn this Quest Podcast episode, we chat with one of Muscular Dystrophy Association’s Ambassadors, Isaac Banks about finding fulfillment in our lives as we skyrocket into 2024. As a certified public speaker, author, and podcaster, he has devoted his career to providing equity and inclusion for others and finds personal fulfillment through his faith and mindfulness. He joins us to share his experiences, expertise, and advice. Transcript Guests: Isaac Banks has many obstacles that could stop...
36: Episode 36 - Wrapping Up 2023 with Leah and Amy
December 05, 2023 22:57 - 41 minutes - 38.3 MBIn this Quest Podcast episode, we chat with Muscular Dystrophy Association’s National Ambassadors, Leah Z., and Amy Shinneman. Amy feels that connecting and sharing her story with others through MDA has been life changing. Leah is a dedicated advocate that feels it is important to advocate for yourself and stand up for those that are not able. These ladies join us to share their experiences, expertise, and advice. Transcript Guests: Amy lives with a type of muscular dystrophy called Bethl...
35: Episode 35 - Bridging the Gap Between Intention, Action, and Community Inclusion
November 14, 2023 19:48 - 43 minutes - 39.8 MBIn this Quest Podcast episode, we chat with the Director of Marketing and Communications at Idealist.org, President for New York Women in Communications (NYWICI) and host of the NYWICI WomenHeard Changemakers podcast. Georgia Galanoudis had devoted her career to deliver advice, inspire action, and make us feel closer together while sharing stories of resilience and positivity. She joins us to share her experiences, expertise, and advice. Transcript Guest: Throughout her career Georgia Gal...
34: Episode 34 - Job Searching, Interviewing, and Employment with a Disability
October 23, 2023 15:10 - 46 minutes - 32.2 MBIn this Quest Podcast episode, we chat with a distinguished business leader from the St. Louis area, who lives with physical disabilities. Lori Becker, CEO of Starkloff Disability Institute, has devoted her career to promoting diversity and inclusion both in the workplace and in the community. She joins us to share her experiences, expertise, and advice in recognition of National Disability Employment Month. If you would like to get involved in advocating for policy issues related to emplo...
33: Episode 33 - Wheelchair Barbie Talks Advocacy & Inclusion
September 13, 2023 19:56 - 1 hour - 42 MBIn this Quest Podcast episode, we chat with a renowned journalist, model and disability rights activist, who lives with physical disabilities. Madison Lawson, who has been featured in publications including Vogue, Glamour, Teen Vogue, Allure and brands like Sephora, PrettyLittle Thing, and Olay, joins us to share her experiences, expertise, and advice when it comes to navigating life. Transcript Guests: Madison Lawson is a journalist, model and disability rights activist. Her written work...
32: Episode 32 - Accessible Air Travel and Advocacy Updates
August 09, 2023 20:07 - 1 hour - 43.6 MBIn this Quest Podcast episode, we chat with Mark Fisher, MDA’s Director of Advocacy Engagement and Michael Lewis, MDA’s Director of Disability Policy, an advocate who lives with physical disabilities. They join us to share the most recent air travel updates, advocacy information, and expertise and advise about MDA's grassroots program and advocacy volunteer efforts. Please join us and make your voices heard about making air travel accessible at mda.org/airtravel. Transcript Guests: Mark F...
31: Episode 31 - ALS Podcast with Brooke Eby
July 19, 2023 15:19 - 48 minutes - 33 MBIn this Quest Podcast episode, we chat with Brooke Eby, who was diagnosed with ALS in March 2022. Brooke Eby was recently featured on the Today Show, and with almost 70,000 followers on Instagram alone hopes to spread awareness of ALS to as many people as possible. Transcript Guests: Brooke is a social media influencer who was recently featured on the Today Show. She was diagnosed with ALS in March 2022 after four years of confusing symptoms in her leg. She hopes to spread awareness of AL...
30: Episode 30 - A Conversation with Steve Way
June 23, 2023 18:47 - 53 minutes - 36.9 MBIn this Quest Podcast episode, we chat with a renowned comedian, writer, and advocate who lives with physical disabilities. Steve Way, actor of the Hulu Original “Ramy”, joins us to share his experiences, expertise, and advise when it comes to navigating life and Hollywood. Transcript Guests: Steve is a 32-year-old actor, comedian, writer, and speaker. He was born with Ullrich Congenital Muscular Dystrophy and is an advocate for disability awareness. Steve performs stand-up comedy and mo...
29: Episode 29 - Expert Accessible Travel Tips for Your Next Vacation (Travel with Sylvia & Cory)
May 15, 2023 21:09 - 54 minutes - 37.3 MBSummer is around the corner! In this Quest Podcast episode, we chat with two renowned travel writers who live with physical disabilities. Sylvia Longmire, creator of the Spin the Globe accessible travel blog, and Cory Lee, creator of the Curb Free with Cory Lee travel blog, join us to share their experiences, expertise, and advice when it comes to accessible travel. Transcript Guests: Sylvia Longmire is an award-winning accessible travel writer and photographer, a service-disabled Air Fo...
28: Episode 28 - There is No Such Thing as Normal
April 14, 2023 16:01 - 43 minutes - 40 MBMegan DeJarnett is an author, speaker, disability DEI educator, and inclusion advocate. Megan lives with SMA and is the organizational founder of No Such Thing, a company with a mission to help others redefine purpose by removing defining labels. Author of the children's books, "No Such Thing as Normal" and "Lovely as Can Be", Megan teaches children the ways in which everyone is unique and that our differences are what make us special. She joins the Quest Podcast to talk about the importance...
27: Episode 27 - The Changing Landscape of Neuromuscular Care
March 14, 2023 17:24 - 55 minutes - 38.3 MBAs new treatments, cutting edge research, and a better understanding of genetic sequencing and mutations bring innovative change to the treatment landscape for neuromusclar disease, understanding your options and accessing care is more important than ever. We sit down with Dr. Matthew Harms, a neuromuscular neurologist and neruogenetics expert, to discuss what these changes mean to our community as he shares his advice, insights, and expertise on the changing landscape of neuromuscular care....
26: Episode 26 - Catching Up with Bill Crossland
February 15, 2023 17:05 - 43 minutes - 29.9 MBFor our February Valentine's Day Quest Podcast, we catch up with Bill Crossland, a writer, director, producer, and actor who lives with muscular dystrophy. Bill shares his insights and experiences with our live audience as we chat about dating with a disability, love, relationships, and his feature-length-film "Catching Up". His movie is available to stream on for free on Tubi and Amazon Prime. You can watch the official trailer here: https://www.youtube.com/watch?v=0QrNnmlVqaI. (Note: "Cat...
25: Episode 25 - New Year, New Mindset
January 17, 2023 22:41 - 1 hour - 45 MBWe are excited to start a new year talking about new mindsets, especially when it comes to adversity. On our first episode of 2023, Mindy talks mindset with Jose Flores, who lives with spinal muscular atrophy, in front of a live audience. Jose is a professional speaker, "mindset disruptor," and #1 best-selling author of “Don't Let Your Struggle Become Your Standard." Jose speaks all over the world, sharing his experience of growing up with a physical "disability" and how you can use the pow...
24: Episode 24 - Embracing Life with a Disability
December 15, 2022 20:06 - 49 minutes - 34.3 MBOn this episode of Quest podcast, we join forces with hosts of the popular podcast "Embrace It," Estela Lugo and Lainie Ishbia. Both women live with Charcot Marie Tooth (CMT) and are active with the Hereditary Neuropathy Foundation, raising awareness and offering support to their community. Estela and Lainie bring their incredible chemistry and personality to our discussion on living with a disability, parenting, business, fashion, their podcast and workshops, and their over-arching goal to ...
23: Episode 23 - Advocacy, Accessibility, and the DOT
November 16, 2022 17:31 - 53 minutes - 36.8 MBBarriers in travel and the lack of accessible transportation are huge issues for many people living with nueromuscular disease and other physical disabilities. Today, we chat with Kelly Buckland, a disability policy advisor at the U.S. Department of Transportation (DOT), and Michael Lewis, the director of disability policy at MDA. Both guests play active roles in advocating for the rights of people with disabilities and for meaningful advances in accessible air travel and transportation poli...
22: Episode 22 – Creating an Inclusive Work Environment
October 11, 2022 13:20 - 24 minutes - 17 MBInclusively is a technology centered inclusions solution and employment platform for job seekers with disabilities, mental health conditions, and chronic illnesses. Inclusively’s vision is to create a front door to employment that is open to all people, unlocking the world’s hidden talents in the disability community. In this episode, Sarah Bernard, the co-founder and chief operating officer at Inclusively, shares her expertise on the importance of inclusion and accessibility in the workplac...
21: Episode 21 – MDA Let's Play - A Community for Everyone
September 09, 2022 15:39 - 29 minutes - 20.4 MBMDA Let's Play is a welcoming online gathering place for teens and adults where they play together, forge new friendships, share similar challenges, learn new skills, and sometimes get to hang out with celebrities, sports athletes, and professional creators. More than two million viewers have watched MDA Let's Play online events on Twitch. I chat with Larry Leiberman, the founder of MDA Let’s Play, Kenny Small (AKA Beaniez), the program manager and host of MDA Let’s Play, and Charlie Mabry, ...
20: Episode 20 - Lights, Camera, Action...and Accessibility: Part 3
August 11, 2022 01:14 - 21 minutes - 14.6 MBAs the third podcast in our accessibility in the entertainment world, we sit down with Jonathan Lengel. Jonathan is an actor, singer, and performer who lives with a rare form of congenital muscular dystrophy. Jonathan became active in theater as a kindergartener and was recently discovered as part of a worldwide casting call to star in the upcoming Netflix adaptation of 13: The Musical, premiering August 12th. Jonathan also joined the cast of the Will Farrell produced musical comedy Theater ...
19: Episode 19 - Lights, Camera, Action - and Accessibility: Part 2
July 12, 2022 16:22 - 47 minutes - 32.8 MBJames Ian is a singer, songwriter, multi-instrumentalist, actor and writer who lives with spinal muscular atrophy (SMA). His song "Spaces" has over 744,000 views on YouTube and highlights the lives of others living with SMA. He worked with Genentech, a three-time Grammy nominated producer, and an executive at Universal Music to create this incredible song and video. Ian shares his experience living with a nueromuscular disease, his passion for his multitude of creative projects, and why it's...
18: Episode 18 - Lights, Camera, Action - and Accessibility: Part 1
July 11, 2022 21:11 - 20 minutes - 14.1 MBBorn with a rare form of neuromuscular disease, Leah Zelaya faced a host of challenges including medical claims that she would possibly never walk. In spite of these obstacles, Leah learned to believe in her abilities. Through strenuous physical therapy and determination, she is now able to ambulate with forearm crutches. Leah has taken that determination and applied it to sports and the arts. Leah is a dancer, cyclist, actor, model, and advocate for the community of individuals with disabil...
17: Episode 17: The ABCs of Accessible Travel
June 16, 2022 01:12 - 41 minutes - 28.2 MBToday's guest is Lorraine Woodward, an entrepreneur, business owner, and life-long advocate for people with disabilities. She is the creator of multiple businesses, services, and foundations. An avid traveler, she created an accessible vacation home at Carolina Beach, NC, for her family to enjoy and to serve as a short-term rental home for other travelers in need of an accessible location. She recognized a serious lack of accessible vacation homes, which led to her newest endeavor: Becoming ...
16: Episode 16: Turning Pain into Purpose - An ALS Advocate's Story
May 19, 2022 17:41 - 50 minutes - 34.7 MBSabrina Johnson lost her dad to ALS in 2019. In this episode, she shares how she turned her pain into purpose and became an ALS advocate. The journey to diagnosis was hard enough, but watching her dad battle a terminal disease forever changed her. After a lightbulb moment, she decided to turn her anger into ambition and became an advocate for patients and families with ALS. In 2021, she founded Sabrina Johnson Advocate LLC to provide support, resources, and guidance to others who are navigat...
15: Episode 15: Power of ALS Registries
May 10, 2022 21:30 - 46 minutes - 31.7 MBToday we are connecting with the key players of two national ALS Registries to discuss the power that these registries harness to better understanding this disease, trends, and potential treatments. We will be speaking with Dr. Paul Mehta, the Principal Investigator for the United States congressionally-mandated National Amyotrophic Lateral Sclerosis (ALS) Registry. A registry database which resides within the Centers for Disease Control and Prevention and is responsible for providing medica...
14: Episode 14: Know Your Rights - A Conversation with Judith Heumann
April 19, 2022 19:50 - 50 minutes - 34.9 MBJudith (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 books, and has been featured in numerous documentaries, including the acclaimed "Crip Camp." From 1...
13: Episode 13: Parenting
March 09, 2022 21:37 - 1 hour - 44.7 MBParenting 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 specific to our own, individual journeys and is NOT intended to be used as medical advice or medical f...
12: Episode 12: Love & Marriage
February 04, 2022 05:00 - 55 minutes - 38.5 MBToday 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. Transcript Guests: Amy and Jamie Shinneman met in high school when she was a freshman and he ...
11: Episode 11: Siblings Tell All
January 11, 2022 22:39 - 54 minutes - 37.4 MBHaving 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 condition and the other does not. We'll explore the dynamics and speak with the siblings as well as a re...
10: Episode 10: Holiday Do-it-Yourself Gifts, Crafts & Recipes
December 03, 2021 19:22 - 53 minutes - 36.9 MBNeed 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 Transcript Guests: Casey Stark lives in the Milwaukee Suburbs with her roommate Matt and their...
9: Episode 9 - Combating the Stress of the Holidays
December 03, 2021 18:13 - 30 minutes - 20.8 MBThe 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 difficult topics and provide some suggestions for how to handle holiday stress. Transcript Paig...
8: Episode 8: Access to the World: Accessibility in Commercial Architecture
November 18, 2021 16:10 - 33 minutes - 23.3 MBThis 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 has been with the United Spinal Association for 25 years. Mr. Marinelli provides continuing e...
7: Episode 7: Access to the World: Accessibility in Our Homes
November 18, 2021 16:10 - 46 minutes - 32.3 MBThis 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 businessman and entrepreneur from Maryland. He was diagnosed with limb girdle muscular dystrophy is ...
6: Episode 6: Talent for Hire!
October 08, 2021 04:00 - 49 minutes - 28.7 MBOctober 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 statistic and how we can all use our voices to make a difference. For more information, watch ...
5: Episode 5: Access to the World: Hotels
September 08, 2021 01:00 - 24 minutes - 14 MBThis 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 make travel easier for individuals with disabilities. Because we like to focus on solutions arou...
4: Episode 4: Access to the World: Air Travel
September 08, 2021 00:00 - 36 minutes - 20.8 MBThe 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-testing and modification is phenomenal, but these things take a village to bring to fruition. Our...
3: Episode 3: Access to the World: We Carry Kevan
July 20, 2021 07:00 - 39 minutes - 22.4 MBFor 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 special "adult-size" backpack so that Kevan and his friends could go explore Europe and China, ...
2: Episode 2: Buses, Trains & Automobiles - Getting from Point A to Point B
June 22, 2021 07:00 - 39 minutes - 22.5 MBFor 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 to be desired...and how YOU can get involved to advocate for improvements to public transportat...
1: Episode 1 : The Beginning: Receiving a Diagnosis
June 10, 2021 07:00 - 51 minutes - 29.4 MBFor 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 get a diagnosis, how it impacted their lives, how they’ve learned to live with it, what’s been h...
1: Pollyanna test
June 01, 2021 20:47 - 23 minutes - 21.7 MBThe quick brown fox jumps over the lazy dog.