MDA Quest Podcast

MDA 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, a streamer and content creator living with Duchenne muscular dystrophy who has connected with MDA Let’s Play to host games and fundraising events.

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Guests:

Larry Lieberman is the founder of MDA Let's Play, a vibrant community of supportive gamers and creators. Larry is a longtime entertainment industry veteran, having produced several top albums and television shows as well as hundreds of concerts, festivals, and gaming events. In addition to MDA, his philanthropy focuses on education and the mental health and emotional wellbeing of young adults. He is the former chief operating officer of Charity Navigator.

Connect with Larry:

Kenny Small, more commonly known as Beaniez, is the Program Manager and Host for MDA Let’s Play. Beaniez began his career in gaming with Collegiate Esports, where he acted as Team Manager for Rutgers University Overwatch while pursuing event hosting/commentary. Nowadays he spends his time streaming on the MDA Let’s Play channel and creating enjoyable memorable experiences for the members of the MDA Let’s Play community. Between hosting streams, events, and community activities, Beaniez works to connect the beneficiaries of MDA & their supporters in a safe and fun virtual environment. Outside of work you can catch him playing his favorite games and trying to keep his cat Lenny under control!

Connect with Beaniez:

Charlie Mabry lives with Duchenne muscular dystrophy and has been part of The MDA Ambassador Program since 2017. He has participated in multiple MDA community and fundraising events where he lives in Georgia. In 2020, Charlie became a streamer and content creator and started a Tik Tok account called Keepcharliemoving. His platform focuses on sharing his life story living with Duchenne Muscular Dystrophy. An avid gamer, he also streams video games on Twitch. Charlie connected with the MDA Let's Play community, a community he says its one of the best things that he has ever been a part of. Since joining MDA Let’s Play, Charlie has been involved in a variety of fundraising events, including MDA Takes Vegas and MDA Rivals. You can catch Charlie hosting Rocket league games every other Sunday at 2pm EST on the MDA Let's Play Twitch Channel. You can also find him on all social platforms as KeepCharlieMoving and on Twitch at https://www.twitch.tv/charlieharley_1!

Connect with Charlie:

Mindy Henderson is the Director of Quest Media, Editor-in-Chief of MDA’s Quest magazine 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, and just published her first book, The Truth About Things That Suck.

Connect with Mindy:

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.

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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/

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.

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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/

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.

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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/

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.

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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:

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:

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.

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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:

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:

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/

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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.

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 [email protected] or to the MDA MOVR email at [email protected]. MOVR website: https://www.mda.org/science/movr-data-hub-neuromuscular-observational-research.

Connect with Elisabeth:

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/

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 books, and has been featured in numerous documentaries, including the acclaimed "Crip Camp." From 1993 to 2001, Judy served in the Clinton Administration as the Assistant Secretary for the Office of Special Education and Rehabilitative Services in the Department of Education, and During his presidency, President Obama appointed Judy as the first Special Advisor for International Disability Rights at the U.S. Department of State. She has received numerous awards and honorary doctorates. In this episode, Judy provides us with a masterclass on all things advocacy.

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Guests:

Judy Heumann is a lifelong advocate for the rights of disabled people. She has been instrumental in the development and implementation of legislation, such as Section 504, the Individuals with Education Act, the Americans with Disabilities Act, the Rehabilitation Act, and the UN Convention on the Rights of Persons with Disabilities.

Her memoir,"Being Heumann: An Unrepentant Memoir of a Disability Rights Activist," co-authored by Kristen Joiner, was published in 2020. She is also featured in the Oscar-nominated documentary, Crip Camp: A Disability Revolution, directed by James LeBrecht and Nicole Newnham. Judy produces a podcast called The Heumann Perspective, which features a variety of members from the disability community.

Judy serves on a number of non-profit boards, including the American Association of People with Disabilities, the Disability Rights Education and Defense Fund, Humanity and Inclusion, Human Rights Watch, United States International Council on Disability, and Save the Children. She has 20 years of non-profit experience working with various disability organizations, including being a founding member of the Berkeley Center for Independent Living. Prior to starting the Judith Heumann LLC, she served in the Clinton Administration and Obama administrations.

Connect with Judy:

Website: https://judithheumann.com/
YouTube: https://www.youtube.com/c/JudyHeumannTHP
Apple Podcasts: https://podcasts.apple.com/us/podcast/the-heumannperspective/id1558688277
Spotify: https://open.spotify.com/show/0CYpP8LB2wZ8vUM93DnINF
Instagram: https://www.instagram.com/theheumannperspective/
Twitter: https://twitter.com/judithheumann
Facebook https://www.facebook.com/TheHeumannPerspective/
Subscribe to Judy's Newsletter: https://eepurl.com/hSfMfn
Tshirts: https://www.bonfire.com/judy-heumann-1/?productType=bacf6cd6-b53d-469c-ab96-02afe5b15f71

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/

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 specific to our own, individual journeys and is NOT intended to be used as medical advice or medical fact for anyone other than the individuals involved.

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Guests:

Samantha Przybylski is a stay-at-home mom to her four-year-old daughter, Scarlett. Samantha has Spinal Muscular Atrophy type 3. Samantha graduated with her Bachelor’s of Science in Cytotechnology. After college, her and her husband’s jobs took them to various cities in Texas and eventually to Arizona. She worked as a cytotechnologist for 7 years.

Samantha decided after having her daughter and as her disease progressed that it was best for her to leave her career and instead take on the important role of being a stay-at-home mom. She and her family decided it would be best to move back to their home state of Wisconsin to raise Scarlett. They built a house and settled in. 

Samantha likes to advocate for SMA and disabilities in general on her Instagram. She also shares her everyday life and her adventures of being a disabled parent to Scarlett.

Connect with Samantha:

Erin Pieper is a St. Louis native and the author of Dismantling the Disability. Her book chronicles her uphill battle as a single mom living with Friedreich's Ataxia (FA) who advocates for finding a treatment for this rare disease. Erin has participated in many fundraising events, locally and nationally. She has taken part in more than five Research Trials at the University of South Florida. Erin is also the designer of "FAn", a t-shirt campaign to spread awareness and support for those diagnosed with FA. She is committed to overcoming the struggles of FA in order to excel as a mother and make the world a kinder place.

Connect with Erin:

Check out more about Erin's book, Dismantling the Disability: My Uphill Battle with Friedreich's Ataxia.

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:

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.

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Guests:

Amy and Jamie Shinneman met in high school when she was a freshman and he was a sophomore. They dated for about two years before breaking up halfway through his senior year but remained friends throughout their college years. After college, Jamie moved to Memphis Tennessee where he started his work as a Civil Engineer. After Amy visited Jamie in Memphis, they got back together. She moved to Tennessee and started working in social services. They married and lived in Tennessee for five years before returning to their home state of Indiana, where they have resided since 2002. Amy and Jamie have two boys Jack (14) and Luke (18). Amy states that her and Jamie are a great team. She believes that meeting each other at such a young age has helped their relationship. Jamie has learned how to meet Amy’s needs with her disability. The couple says that it’s all about communication, and that is something that they feel they are very good at!

Connect with Amy:

John Kerr and Krystle Englehart have been married for seven years and live in Sacramento, CA with their beautiful dog, Coco.

John works in healthcare services as an Analyst for the state of CA and operates a nonprofit, The John Kerr Foundation, for those with living with Muscular Dystrophy (MD). Each summer, his nonprofit hosts a four-day, classroom-centered retreat in the Yosemite Valley for young adults with MD. The retreat’s curriculum covers all aspects of adult independent living skills, including a deep focus on dating and relationships.

John is living with Spinal Muscular Atrophy type 2. In his spare time, he enjoys spending time with his wife going to concerts, sporting events, traveling, and exploring locally owned restaurants.

Krystle is a Research Specialist and works in Mental Health for the state of CA. She assists with the development and presentation of the dating & relationships curriculum for the John Kerr Foundation’s annual Life-Development Retreat.

In her free time, she enjoys indoor cycling, reading, and dating her husband, John.

Connect with John:

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/