20 episodes

The official podcast for the Muscular Dystrophy Association

MDA Quest podcast Muscular Dystrophy Association

    • Health & Fitness
    • 5.0 • 4 Ratings

The official podcast for the Muscular Dystrophy Association

    Episode 20 - Lights, Camera, Action...and Accessibility: Part 3

    Episode 20 - Lights, Camera, Action...and Accessibility: Part 3

    As 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 Camp. He shares his insigts about his time in the spotlight and the importance of inclusion and representation in the entertainment world.

    Guests:

    Jonathan Lengel is an actor, singer, and performer. He will star in the Netflix adaptation of 13: The Musical, premiering August 12th globally. He was discovered as part of a worldwide casting call for the role of Archie. 13 is based on the hugely popular musical of the same name, which debuted on Broadway in 2008, and featured the first and only all-teenager cast, which included Ariana Grande and Liz Gillies. The film is an exciting coming-of-age journey that explores all the ups and downs of preteen life: being the new kid in town, making friends at a new school, crushes and first kisses — not to mention the challenges of getting along with your parents. In addition to 13, Jonathan just joined the cast of the Will Farrell produced musical comedy Theater Camp where he will appear alongside Ben Platt, Amy Sedaris, and Patti Harrison.

    Connect with Jonathan:

    Instagram: jlengelofficial

    Mindy Henderson is the Editor-in-Chief of MDA’s Quest family of content and the host of this podcast. She was diagnosed with Spinal Muscular Atrophy, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and a writer, with her first book set to hit book stores in Summer of 2022.

    Connect with Mindy:

    LinkedIn: https://www.linkedin.com/in/hendersonmindy/
    Instagram: https://www.instagram.com/mindyhendersonspeaks/

    • 21 min
    Episode 19 - Lights, Camera, Action - and Accessibility: Part 2

    Episode 19 - Lights, Camera, Action - and Accessibility: Part 2

    James 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 so important to have individuals with disabilities represented in the entertainment world.

    Transcript





    Guests: 





    James Ian is a singer, songwriter, multi-instrumentalist, actor and writer. He lives with spinal muscular atrophy Type 3. James is a passionate advocate for authentic representation of disabled actors in TV, film, and other media. James' music is featured on the iHeartRadio website. His filmography includes several movies, commercials, TV series, and documentaries, including The Allnighter, Pugsley, Kimboo & Kids, and Inner Warrior. James grew up in Maryland and attended college and law school in Washington, D.C. He now resides in Los Angeles, where he enjoys exploring all that the West Coast has to offer.





    Connect with James:




    Instagram: @jamesianmusic
    Twitter: @jamesianmusic
    SPACES video: https://www.youtube.com/watch?v=ZLyRpDn9bTo





    Mindy Henderson is the Editor-in-Chief of MDA's Quest family of content and the host of this podcast. She was diagnosed with Spinal Muscular Atrophy, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and a writer, with her first book set to hit book stores in Summer of 2022.





    Connect with Mindy:




    LinkedIn: https://www.linkedin.com/in/hendersonmindy/
    Instagram: https://www.instagram.com/mindyhendersonspeaks/

    • 47 min
    Episode 18 - Lights, Camera, Action - and Accessibility: Part 1

    Episode 18 - Lights, Camera, Action - and Accessibility: Part 1

    Born 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 disabilities. You may have seen her at New York Fashion Week, sharing her story on the MDA Telethon hosted by Kevin Hart, or in Universal Pictures' movie production called "Marry Me", starring Jennifer Lopez, Owen Wilson.

    Transcript





    Guests:





    Leah Zelaya was born with a rare form of neuromuscular disease and has 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. In 2008 through strenuous physical therapy, she began to walk with bilateral leg bracing and a walker. Later, in that year she traded her walker for a pair of forearm crutches that improved her independent ambulation. She has applied that same determination to a myriad of interests and talents. She is a dance, athlete, advocate, model, and actress. She has performed in nine public recitals, competed and won first place in the adaptive skiing "Hartman Race", joined a hand-cycling team, and serves as an ambassador for the MDA. As an ambassador, she has gone to our nation's capital to speak to both senators and congress representatives of New York State. Leah walked in New York Fashion Week for Lulu Et Gigi and walked for the ROD Fashion Virtual Show for Runway of Dreams. In the summer of 2020 Leah was enrolled in Open Style Lab summer program where she collaborated with Open Style Fellows and MDA members to create the "Easy Zip,'' a functional hand tool that assists people with their zippers. Recently, Leah has made her debut as an actress in Universal Pictures' movie production called "Marry Me", starring Jennifer Lopez, Owen Wilson, and MALUMA. Leah has created a total of three short films entitled, QuaranTime for Gold Productions. Tenacious Jaci and A Hero's Grace for the Easter Seals Disability Film Challenge. She has also been an extra on the TV Program Sesame Street (Episode 5120 "Family Day".) Through all these accomplishments, she continues to discover her unique talents and aptitudes while believing that she can overcome the impossible.





    Connect with Leah:




    Website: https://www.leahjzelaya.com/
    Instagram: @Leahj.zelaya
    Twitter: @LeahJZelaya





    Mindy Henderson is the Editor-in-Chief of MDA's Quest family of content and the host of this podcast. She was diagnosed with Spinal Muscular Atrophy, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and a writer, with her first book set to hit book stores in Summer of 2022.





    Connect with Mindy:




    LinkedIn: https://www.linkedin.com/in/hendersonmindy/
    Instagram: https://www.instagram.com/mindyhendersonspeaks/

    • 20 min
    Episode 17: The ABCs of Accessible Travel

    Episode 17: The ABCs of Accessible Travel

    Today'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 RentABLE. Becoming RentABLE is a platform that lists validated and certified accessible rental properties at vacation destinations and near colleges and universities. Lorraine sits down with us and shares her insights into accessible travel and vacation rentals.

    Transcript





    Guests:





    Lorraine Woodward is an entrepreneur and business owner. Lorraine served on the staff of US Congressman Ed Bethune in Washington DC after college. She has been recognized for her work in marketing/communications for local television, non-profit hospitals, for-profit healthcare systems, and national non-profits. Lorraine is a life-long advocate for people with disabilities and the creator of multiple businesses, services, and foundations. In response to the invisibility of people with disabilities in print materials and on websites, Lorraine founded Realistic Reflections which portrays people with disabilities doing a wide range of everyday activities. The leading international stock photography company, Getty Images, bought the rights to Realistic Reflections photo stock, increasing Getty images by nearly 300 percent. Lorraine created the National Barrier Awareness Foundation. She founded Lorraine’s Canes, providing custom artistic walking canes for children and adults. She designed and manages an accessible vacation rental at Carolina Beach, NC. She created a company that sells custom, fashion wheelchair covers that showcase the user’s personality. Lorraine’s newest endeavor, Becoming AccessABLE, will create accessible rental properties at vacation destinations and near colleges and universities. Lorraine is married with two grown sons and shares every chair and lap in the house with two spoiled Maine Coon cats.





    Connect with Lorraine:





    Facebook: facebook.com/BecomingRentABLE

    Instagram: instagram.com/BecomingRentABLE

    Twitter: twitter.com/BRentable

    Linkedin: linkedin.com/in/lorrainebwoodward

    Pinterest: pinterest.com/BecomingRentABLE

    Website: www.becomingRentABLE.com






    Mindy Henderson is the Editor-in-Chief of MDA’s Quest family of content and the host of this podcast. She was diagnosed with Spinal Muscular Atrophy, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and a writer, with her first book set to hit bookstores in Summer of 2022.





    Connect with Mindy:





    LinkedIn: https://www.linkedin.com/in/hendersonmindy/

    Instagram: https://www.instagram.com/mindyhendersonspeaks/

    • 41 min
    Episode 16: Turning Pain into Purpose - An ALS Advocate's Story

    Episode 16: Turning Pain into Purpose - An ALS Advocate's Story

    Sabrina 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 navigating life and loss with ALS.

    Transcript





    Guests:





    Sabrina Johnson lost her father, her main man whom she calls Ton, to ALS in 2019. After watching her dad battle a terminal disease forever changed her, she began sharing her story and became an advocate for others in the ALS community. Sabrina founded Sabrina Johnson Advocate LLC in 2021, an advocacy initiative that provides support, resources, and guidance to individuals with ALS and their loved ones. She authored a guidebook to navigating ALS, Understanding ALS for the Average Ton, and a children’s book about the relationship between her father and her son, Breaker Breaker 1-9 Where’s My Little Man At. Sabrina is also the Chief Operating Officer of I-Ally, a one-stop-shop of support and services for family caregivers and their unique needs.





    Connect with Sabrina:





    Facebook: https://www.facebook.com/sabsjohnsonadvocate/

    Instagram: https://www.instagram.com/sabsjohnsonadvocate/

    E-mail: sabrina@sabrinajohnsonadvocate.com

    Website: https://www.sabrinajohnsonadvocate.com/

    Sabrina’s book: Understanding ALS for the Average Ton

    Sabrina’s new children’s book: Breaker Breaker 1-9 Where’s My Little Man At?



    Mindy Henderson is the Editor-in-Chief of MDA’s Quest family of content and the host of this podcast. She was diagnosed with Spinal Muscular Atrophy, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and a writer, with her first book set to hit bookstores in Summer of 2022.





    Connect with Mindy:





    LinkedIn: https://www.linkedin.com/in/hendersonmindy/

    Instagram: https://www.instagram.com/mindyhendersonspeaks/

    • 50 min
    Episode 15: Power of ALS Registries

    Episode 15: Power of ALS Registries

    Today 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 medical, scientific, and epidemiological expertise on matters related to ALS. We will also speak with Dr. Elisabeth Kilroy, the Director of MOVR at the Muscular Dystrophy Association. MOVR is the neuroMuscular ObserVational Research Data Hub, which captures medical and genetic data from individuals with neuromuscular diseases nationwide.




    If you have been diagnosed ALS, register with the National ALS Registry here: https://www.cdc.gov/als/

    Transcript




    Guests:





    Dr. Paul Mehta is the Principal Investigator for the United States congressionally-mandated, National Amyotrophic Lateral Sclerosis (ALS) Registry, which resides within the Centers for Disease Control and Prevention. The registry is responsible for providing medical, scientific, and epidemiological expertise on matters related to ALS. Prior to joining ATSDR, Dr. Mehta was responsible for overseeing external research initiatives for the National Center for Environmental Health (NCEH) and ATSDR. Dr. Mehta started his career at Center for Disease Control (CDC) as a Team Leader for the Division of Select Agents and Toxins (DSAT) where he was responsible for CDC's Etiological Agent Import Permit Program (EAIPP). He was also responsible for conducting audits of high containment laboratories nationally. Dr. Mehta has a Doctor of Medicine (MD) from Fatima Medical Science Foundation and Bachelor of Arts in Biology from the University of Toledo.






    Register with the ALS Registry: https://www.cdc.gov/als/


    Connect with the CDC: https://twitter.com/CDCEnvironment

    https://www.linkedin.com/company/centers-for-disease-control-and-prevention/


    Dr. Elisabeth Kilroy's passion for understanding the intricacy of the neuromuscular system and human movement was ignited after watching the progression of her father and brother's muscular dystrophy. Dr. Kilroy earned her BS in Exercise Science with a minor in Neuroscience from College of Charleston in December 2014. She then completed her PhD in June 2020 in the lab of Dr. Clarissa Henry at University of Maine. Her graduate work focused on the role of inactivity versus electrical stimulation on disease progression in the zebrafish model for Duchenne muscular dystrophy. She then served as a post-doctoral scientist in the lab of Dr. Kevin Flanigan at Nationwide Children's Hospital, where she focused on understanding dystrophin expression in the brain. Now, Dr. Kilroy is the Director of MOVR at the Muscular Dystrophy Association. MOVR is the neuroMuscular ObserVational Research Data Hub, which captures medical and genetic data from individuals with neuromuscular diseases.





    To learn more about MOVR, individuals can send an email to Elisabeth at ekilroy@mdausa.org or to the MDA MOVR email at mdamovr@mdausa.org. MOVR website: https://www.mda.org/science/movr-data-hub-neuromuscular-observational-research.





    Connect with Elisabeth:





    Instagram: @ekilroy44

    Twitter: @ekilroy44

    LinkedIn: https://www.linkedin.com/in/elisabeth-kilroy-50898976/



    Mindy Henderson is the Editor-in-Chief of MDA's Quest family of content and the host of this podcast. She was diagnosed with Spinal Muscular Atrophy, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and a writer, with her first book set to hit book stores in Summer of 2022.





    Connect with Mindy:




    LinkedIn: https://www.linkedin.com/in/hendersonmindy/
    Instagram: https://www.instagram.com/mindyhendersonspeaks/

    • 46 min

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