MDA Quest Podcast

Muscular Dystrophy Association

The official podcast for the Muscular Dystrophy Association

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23: Episode 23 - Advocacy, Accessibility, and the DOT
Nov 16 2022
23: Episode 23 - Advocacy, Accessibility, and the DOT
Barriers 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 policies. In this podcast, we discuss current barriers, advocacy goals, policy updates, and recent successes. Successes that include the US airline industry trade organization, Airlines for America (A4A), and seven US passenger airlines’ adoption of the DOT’s Airline Passengers with Disabilities Bill of Rights and recent commitment to making meaningul improvements to passenger accessibility. Learn more about advances in acessible air travel policy:    Learn how you can get involved with MDA’s advocacy initiatives: Buckland is a person with a disability who has been actively involved in disability issues since 1979. Kelly graduated from Boise State University with a bachelor’s degree in social work and Drake University with a master’s degree in rehabilitation counseling. He served for over twenty years as the Executive Director of the Living Independence Network Corporation and the Idaho State Independent Living Council in Boise, Idaho. Kelly has been honored with numerous state and national awards, including the University of Idaho President’s Medallion, the Hewlett-Packard Distinguished Achievement in Human Rights Award, Outstanding Alumni of Boise State University, and Outstanding Alumni of Drake University. Kelly also has a long history with the National Council on Independent Living (NCIL). He served as NCIL Vice-President from 2001 to 2005, NCIL President from 2005 to 2009, and NCIL Executive Director from 2009 to 2021. Currently, he serves as a disability policy advisor for the Office of Assistance Secretary on Policy at the US Department of Transportation (DOT). Connect with DOT:  LinkedIn:  Twitter:   Michael Lewis has spent over a decade working in disability rights for various organizations. His passion for disability policy advocacy stems from his experience as an individual with cerebral palsy. As Director of Disability Policy at MDA, Michael leads MDA’s advocacy efforts on Capitol Hill and with federal agencies to defend and expand access to civil rights, education, economic independence and employment, and accessible recreation and travel for people with neuromuscular diseases and other disabilities. A graduate of UNC-Chapel Hill and Regent University, Michael resides in northern Virginia with his wife and four children. Connect with Michael:  LinkedIn: @MichaelKLewis, @MDA_Advocacy 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:
23: Episode 23 - Advocacy, Accessibility, and the DOT
Nov 16 2022
23: Episode 23 - Advocacy, Accessibility, and the DOT
Barriers 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 policies. In this podcast, we discuss current barriers, advocacy goals, policy updates, and recent successes. Successes that include the US airline industry trade organization, Airlines for America (A4A), and seven US passenger airlines’ adoption of the DOT’s Airline Passengers with Disabilities Bill of Rights and recent commitment to making meaningul improvements to passenger accessibility. Learn more about advances in acessible air travel policy:    Learn how you can get involved with MDA’s advocacy initiatives: Buckland is a person with a disability who has been actively involved in disability issues since 1979. Kelly graduated from Boise State University with a bachelor’s degree in social work and Drake University with a master’s degree in rehabilitation counseling. He served for over twenty years as the Executive Director of the Living Independence Network Corporation and the Idaho State Independent Living Council in Boise, Idaho. Kelly has been honored with numerous state and national awards, including the University of Idaho President’s Medallion, the Hewlett-Packard Distinguished Achievement in Human Rights Award, Outstanding Alumni of Boise State University, and Outstanding Alumni of Drake University. Kelly also has a long history with the National Council on Independent Living (NCIL). He served as NCIL Vice-President from 2001 to 2005, NCIL President from 2005 to 2009, and NCIL Executive Director from 2009 to 2021. Currently, he serves as a disability policy advisor for the Office of Assistance Secretary on Policy at the US Department of Transportation (DOT). Connect with DOT:  LinkedIn:  Twitter:   Michael Lewis has spent over a decade working in disability rights for various organizations. His passion for disability policy advocacy stems from his experience as an individual with cerebral palsy. As Director of Disability Policy at MDA, Michael leads MDA’s advocacy efforts on Capitol Hill and with federal agencies to defend and expand access to civil rights, education, economic independence and employment, and accessible recreation and travel for people with neuromuscular diseases and other disabilities. A graduate of UNC-Chapel Hill and Regent University, Michael resides in northern Virginia with his wife and four children. Connect with Michael:  LinkedIn: @MichaelKLewis, @MDA_Advocacy 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:
22: Episode 22 – Creating an Inclusive Work Environment
Oct 11 2022
22: Episode 22 – Creating an Inclusive Work Environment
Inclusively 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 workplace – and how employers can get on board to create a more inclusive culture. Transcript    Guests:  Sarah Bernard is the Co-Founder and Chief Operating Officer at Inclusively, the technology-centered inclusion solution and employment platform for job seekers with disabilities, mental health conditions, and chronic illnesses.  Before launching Inclusively, Sarah started her career in enterprise marketing with Forrester Research in London working with industry leaders in technology and business strategy. During her tenure at Forrester, Sarah became a top producing sales executive selling into senior leadership at Fortune 500 companies, helping them drive growth and stay ahead of customer and market dynamics. Sarah’s business development experience carried over into Inclusively as she helped build the company’s go-to-market strategy and secure the earliest enterprise clients. Under her leadership, Inclusively is helping companies elevate workplace accommodations from a compliance-reporting function to a competitive advantage and create a more equitable, productive workplace for all. Sarah graduated from the University of Dayton and is based in St. Louis, MO with her husband and four children. Connect with Sarah: Linked In: sarah@inclusively.com  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:  LinkedIn:     Instagram:
21: Episode 21 – MDA Let's Play - A Community for Everyone
Sep 9 2022
21: Episode 21 – MDA Let's Play - A Community for Everyone
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. MDA Let’s Play Information: twitch.tv/mda_letsplay  Transcript 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: 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: 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 with Charlie: 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: LinkedIn:  Instagram:
20: Episode 20 - Lights, Camera, Action...and Accessibility: Part 3
Aug 11 2022
20: 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. Transcript 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:
19: Episode 19 - Lights, Camera, Action - and Accessibility: Part 2
Jul 12 2022
19: 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: 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:
18: Episode 18 - Lights, Camera, Action - and Accessibility: Part 1
Jul 11 2022
18: 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: @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:
17: Episode 17: The ABCs of Accessible Travel
Jun 16 2022
17: 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:
16: Episode 16: Turning Pain into Purpose - An ALS Advocate's Story
May 19 2022
16: 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: sabrina@sabrinajohnsonadvocate.com Website: 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:
15: Episode 15: Power of ALS Registries
May 10 2022
15: 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: 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: with the CDC: 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: with Elisabeth: Instagram: @ekilroy44 Twitter: @ekilroy44 LinkedIn: 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:
14: Episode 14: Know Your Rights - A Conversation with Judith Heumann
Apr 19 2022
14: Episode 14: Know Your Rights - A Conversation with Judith Heumann
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. Transcript 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: Podcasts: to Judy's Newsletter: 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:
13: Episode 13: Parenting
Mar 9 2022
13: Episode 13: Parenting
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. Transcript 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: Instagram: @smasammysue Facebook: Samantha.Przybylski@gmail.com Blog: 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: E-mail: ekpieper12@gmail.com Facebook: Instagram Handle: @peepr My Blog site: FAn campaign website: 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: LinkedIn:  Instagram:
12: Episode 12: Love & Marriage
Feb 4 2022
12: Episode 12: Love & Marriage
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. Transcript 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: 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: 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:
11: Episode 11: Siblings Tell All
Jan 11 2022
11: Episode 11: Siblings Tell All
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 condition and the other does not. We'll explore the dynamics and speak with the siblings as well as a resident expert from the Sibling Support Project about considerations and strategies for navigating this relationship. Transcript Guests:  Ian Yenzer graduated Cum Laude, from Maryville University in 2017 with a degree in psychology. He has completed some Masters level courses towards rehabilitation counseling. Ian worked part time at Exceptional Equestrian‘s (horse riding therapy) as well as the YMCA since graduation. He enjoys being outside with his dogs - Shrek, a black lab service dog and Ollie, a miniature dachshund. Ian likes riding his four wheeler and side by side and being out in nature. He tries to exercise daily by using stationary bike and likes to stand up in his tram (similar to a stand lift) to get out of the usual sitting position and stretch. He also likes to read and play video games in his free time. Ian lives with Becker Muscular Dystrophy. Dr. Abby Yenzer received her doctorate of physical therapy from the University of Evansville in 2017. She has worked in the Washington University Neuromuscular clinic since 2018. Working in the Neuromuscular clinic was her goal from early on in her education. She has been a camp counselor at MDA camp and looks forward to camps return. In the clinic, she works with patients of all ages to determine their current level of function and make recommendations to improve/ease activities of daily life. She also tries to follow up with patients throughout the year to help progress HEPs and review needs. She is involved in clinical research as a clinical evaluator to help the study team determine if there are changes in strength and endurance related to a trial drug or procedure. Her passion is working with patients and subject participants of all backgrounds and diagnoses to offer beneficial activities to help each individual live as independently as possible. Connect with Abby: abbyyenzer@gmail.com  Chris Carroll lives in East Norriton, PA with his wife Joy and their 1-year-old daughter Jordyn. He works as a Sales Mentor for a Home Remodeling Company, and lives with Limb Girdle Muscular Dystrophy Type 2D. Connect with Chris:   Dan Carroll is 43 yrs old and resides in Springfield, PA with wife Jackie and sons Danny and Joey. His occupation is a carpenter foreman in the carpenters union. Dan enjoys coaching and watching his kids play sports. He also enjoy spending time with family. Emily Holl is the Director of The Sibling Support Project at Kindering, the first national program dedicated to the life-long and ever-changing concerns of millions of brothers and sisters of people with special developmental and health concerns. Emily is a social worker, author, and trainer who has provided workshops and groups for siblings and families, presented extensively on sibling issues, and has conducted and published sibling research. A sibling, and board member of the national Sibling Leadership Network, Emily has written about her experiences in blogs, magazines and books such as “Thicker than Water.” She was a co-editor of “The Sibling Survival Guide: Indispensable Information for Adult Brothers and Sisters of People with Disabilities,” published by Woodbine House in 2014. Emily earned a Bachelor of Arts from the University of Massachusetts, a Master of Fine Arts from Columbia University, and a Master of Social Work from Hunter College at the City University of New York. Connect with Emily:     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:
10: Episode 10: Holiday Do-it-Yourself Gifts, Crafts & Recipes
Dec 3 2021
10: Episode 10: Holiday Do-it-Yourself Gifts, Crafts & Recipes
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 Transcript Guests: Casey Stark lives in the Milwaukee Suburbs with her roommate Matt and their dog Mollie. She was diagnosed with Spinal Muscular Atrophy type II at the age of two and uses a power wheelchair. Casey graduated from the University of Wisconsin – Whitewater with a degree in Cellular Biology and obtained a graduate certificate in Cytotechnology from the University of Wisconsin – Madison. She currently works full time as a Research Compliance Coordinator, where she assists in ensuring that necessary approvals are in place for medical research studies. Casey also has a part time job at a local dog training company, where she provides assistance in the office and teaches group classes. Casey has always had a passion for art and being creative. Her passion for art began when she started drawing horses. She continues to grow artistically by trying new techniques and crafts - such as painting, resin, and glass etching. Casey loves creating personalized gifts and artwork that she can share with others. She recently opened her own Etsy shop, The Barking Brush, where she paints personalized pet portraits. Recommendations & More from Casey: Tool Recommendations:Paint brush bucket/holderSta-wet Palette Etsy Shop - - Gabriel is a Family Care & Support Specialist who has been with MDA for over 13 years. She has stated that meeting the many amazing MDA families, camp volunteers, and colleagues during her time in this role is one of the many great blessings in her life. Born and raised in St. Louis, MO, she is the mother of 6 adult children and is expecting her 6th grandchild next year. She previously taught Kindergarten and First Grade, served as Director of the St. Louis County Parks program, and designed and decorated new homes for a local building company. Therese also spent many years as a stay-at-home mom; it was during this time that her passion for cooking and baking came to the forefront. She wrote 12 cookbooks, hosted a local cooking show, and opened a Tearoom where she served recipes from her cookbooks. Prior to the pandemic, she also hosted cooking classes out of her home. She is well known amongst her colleagues, family, friends, and peers for her impeccable and creative hosting, cooking, crafting, and decor skills. In addition to cooking and baking, Therese loves to paint and create, work in her garden, and decorate her home – both inside and out - for the seasons. In her free time, Therese also enjoys traveling and visiting family. Connect with Therese:  TGabriel@mdausa.org 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:
9: Episode 9 - Combating the Stress of the Holidays
Dec 3 2021
9: Episode 9 - Combating the Stress of the Holidays
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 difficult topics and provide some suggestions for how to handle holiday stress. Transcript Paige Lembeck, PhD is a Pediatric Psychologist at the Children’s Hospital of Philadelphia (CHOP). Prior to coming to CHOP, she worked as a Pediatric Psychologist and Assistant Clinical Professor at the Yale Child Study Center, where she provided therapy and consultation services within several Neurology clinics, including the multidisciplinary Muscular Dystrophy Association (MDA) Clinic. Her clinical and research interests include issues related to adjustment to illness, family communication in the context of serious illness, and grief and loss.  Dr. Lembeck received her doctorate in school psychology at the University of Nebraska-Lincoln. Subsequently, she completed her internship and fellowship at St. Jude Children’s Research Hospital, where she provided services to youth with cancer and other catastrophic diseases. Connect with Dr. Lembeck: Email: lembeckp@chop.edu Twitter: @DrPaigeLembeck Resources: American Psychological Association - Holiday Stress Resource Center:  MDA Resource Center:   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:
8: Episode 8: Access to the World: Accessibility in Commercial Architecture
Nov 18 2021
8: Episode 8: Access to the World: Accessibility in Commercial Architecture
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 has been with the United Spinal Association for 25 years. Mr. Marinelli provides continuing education to members of the American Institute of Architects (AIA) and the Society of American Registered Architects (SARA). He is a Contract Instructor for the International Codes Council (ICC) and an Adjunct Faculty Member at Pratt’s Center for Continuing & Professional Studies in New York City. Mr. Marinelli is a certified Accessibility Specialist/Plans Examiner by the International Code Council and serves on various committees including American National Standard Institute Residential Committee which he serves as Chair. He also represented United Spinal Association on the US Access Board’s Emergency Transportable Housing Advisory Committee. Mr. Marinelli holds a Master of Science from the State University of New York at Buffalo. He is certified in code enforcement by the New York State Department of State Codes Division and as an Accessibility Specialist/Plans Examiner by the International Codes Council (ICC). For More Information & to Follow Accessibility Services:  Twitter: LinkedIn: Website: American National Standard Institute for Accessible and Useable Building: ADA:   Email ideas for consideration to ta@accessibility-services.com  2. 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 Fall of 2022. Connect with Mindy: LinkedIn:
7: Episode 7: Access to the World: Accessibility in Our Homes
Nov 18 2021
7: Episode 7: Access to the World: Accessibility in Our Homes
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 businessman and entrepreneur from Maryland. He was diagnosed with limb girdle muscular dystrophy is in his 30s and has not let that slow him down. After years of dealing with mobility challenges, Paul decided it was time to not only become a champion and spokesperson for muscular dystrophy, but also use his talent and passion for fishing, along with his business relationships, and align them with his dedication to increasing research funding, awareness, and support for the Muscular Dystrophy Association (MDA). In 2015, Paul wrote a letter to MDA’s CEO at the time saying he wanted to start a partnership with the MDA. He got a call the day his letter was delivered. And so, Fishing for Muscular Dystrophy was officially formed in a strategic alliance with MDA. FFMD is a professional full-time offshore fishing team that competes at the highest attended and most publicized events on the East Coast and Gulf of Mexico, and attends numerous events to support our partner network of top tier corporations. In the future, FFMD will add to the program with a salt water in-shore team and freshwater bass team, each led by another person with a muscle disease and passion for fishing. Through tournament winnings, local galas and golf tournaments chaired by Paul, FFMD and Robertson have been able to raise more than $2m in support of muscular dystrophy. For More Information & to Follow Fishing for MD:  Twitter: 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 Fall of 2022. Connect with Mindy: LinkedIn:
6: Episode 6: Talent for Hire!
Oct 8 2021
6: Episode 6: Talent for Hire!
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 statistic and how we can all use our voices to make a difference. For more information, watch this MDA webinar on Employment Rights for People Living with a Disability, go to LOVE to have you as a member of our grassroots advocacy network. There are two easy ways you can sign up. Go to mda.org/advocacy or text MDAUSA to 504-57. Transcript Guests: Charlotte Dales Co-founder and CEO of Inclusively, the professional network and employment platform driving inclusion and opportunities for people with disabilities in the workplace. Charlotte's cousin Cameron became the first licensed aesthetician in the state of Florida with Down syndrome and after witnessing Cameron's career fulfillment, she became passionate about replicating her employment success story for all people with disabilities and started Inclusively. Before launching Inclusively, Charlotte started her career in finance with Deutsche Bank in London working with trading desks around the world. After five years, she left her bank job and co-founded her first company, CAKE Technologies, a mobile payment and reservation application for restaurants and bars which scaled to over 200 restaurants in London and was acquired by American Express. Charlotte's experience in technology and startups has allowed Inclusively to provide a new technology solution to drive authentic Diversity and Inclusion in the workplace, helping companies acquire and retain top talent through a human-centered algorithm designed to optimize for the success of job seekers based on their needed accommodations to build sustainable livelihoods and careers. Under Charlotte's leadership, Inclusively is proud to be leading traditional recruitment into a new era of authentic inclusion. Charlotte graduated from University of Colorado, Boulder and lives in Richmond, Virginia with her husband and daughter. Facebook: Moore VP of Talent Operations at Inclusively, an innovative employment platform connecting candidates with disabilities, mental health conditions, and chronic illnesses to inclusive employers. Annie began her career at an international staffing firm, and then moved into the world of boutique recruitment. Annie has experience recruiting professionals from entry-level to the C-suite, across most industries and company sizes. Annie is based in New York, NY. Sarah Schwegel Organizing and Advocacy Specialist at Paraquad. In 2015 Sarah graduated from Maryville University with her Bachelor’s in Rehabilitation. In 2018 she graduated from Saint Louis University with a Master’s in Public Administration. Before she started working at Paraquad in the fall of 2019 Sarah worked in Diversity and Inclusion at Nestle Purina PetCare from 2015-2017, as a Graduate Assistant in the Political Science Department at Saint Louis University from 2017-2018, and then from 2018-2019, Sarah was the Youth Transition Coordinator at Starkloff Disability Institute. She is passionate about helping people with disabilities become as independent as possible through self-advocacy and policy change. Resources Recommended by Sarah: Disability Questions: (where to find a CIL): Medicaid Eligibility (Section1619(B)): – Job Accomodation Network: sschwegel@paraquad.org Mindy Henderson 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 Fall of 2022. LinkedIn:
5: Episode 5: Access to the World: Hotels
Sep 8 2021
5: Episode 5: Access to the World: Hotels
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 make travel easier for individuals with disabilities. Because we like to focus on solutions around here, we are also talking about how to best advocate for better accommodations, and how individuals can set themselves up for success when planning a trip. Transcript Guests: Miriam Eljas Miriam Eljas is the Co-Founder & CEO, accessibleGO. She is a serial entrepreneur who founded and exited a media company in NYC. Miriam left her managerial role in business development at a OurCrowd, a leading equity crowdfunding platform, to start accessibleGO, an award-winning travel site for people with disabilities offering bookings, reviews and community. accessibleGO won the booking.com regional competition for startups with a social impact and has appeared in AARP, New Mobility Magazine and Travel & Leisure. Miriam has also served as a mentor for new companies at several entrepreneurship programs. Miriam was inspired to launch accessibleGO because of her mother Emma Eljas, a wheelchair user who had Multiple Sclerosis. Facebook: Henderson 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 Fall of 2022. LinkedIn:
4: Episode 4: Access to the World: Air Travel
Sep 8 2021
4: Episode 4: Access to the World: Air Travel
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-testing and modification is phenomenal, but these things take a village to bring to fruition. Our guests discuss the amazing work that is being done to improve air travel for wheelchair users and how we can all get on board to help make real change happen. To learn more about the Muscular Dystrophy Association, the services we provide, how you can get involved, and to subscribe to Quest Magazine or to Quest Newsletter, please go to mda.org/quest. To learn more about MDA’s grassroots advocacy program, or to join us in our advocacy efforts, please go to mda.org/advocacy or text MDAUSA to 504-57. Additional Resources & Information: To file a complaint with the Department of Transportation regarding damage to wheelchairs or other issues related to your experience as a traveler with a disability: Reauthorization Act: Carriers Access Amendments Act (ACAAA): support the Air Carriers Access Amendments Act (ACAAA) - Rosa, Ph.D. Proudly serves as a member of MDA’s Board of Directors. Chris serves as Assistant Vice Chancellor for Student Inclusion Initiatives at the City University of New York, the nation’s largest urban public university system. In this role, he designs and leads programs that promote access, equity, and inclusion for students who have historically under-participated in higher education, including CUNY’s 3,200 student veterans, its 17,000 LGBTQI students, its more than 6,000 undocumented students, and its more than 11,000 students with disabilities. A published disability studies scholar, he serves as a faculty member for CUNY’s Master’s Program in Disability Studies and has served as the Co-Executive Officer of the Society for Disability Studies, the international professional association for Disability Studies Scholars. He is the creator of the "CUNY LEADS" program, a model career readiness program for college students with disabilities that empowers them to achieve competitive employment are more than twice the national rate. A staunch advocate for economic justice for people with disabilities, Chris has served as the Chair of the Executive Committee of the U.S. President’s Committee on Employment of People with Disabilities (now known as the U.S. DOL’s ODEP). For his leadership in expanding employment opportunities for New Yorkers with disabilities, Chris was awarded a “Liberty Medal” by the New York Post in 2012. For More Info: City University of NY: CUNY Student Inclusion Initiatives: Erwin Michele Erwin has a successful career in the Fashion Industry, having worked for notable fashion houses, such as Ralph Lauren and Calvin Klein. After her son was diagnosed with SMA (Spinal Muscular Atrophy) and experiencing the difficulties of traveling with a wheelchair she knew something needed to be done. Taking her business acumen and passion for projects she embarked on the journey of getting wheelchairs crash tested for commercial flight and created All Wheels Up. All Wheels Up currently is the only organization in the world Crash Testing Wheelchair Tie Downs and Wheelchairs for Commercial Flight. This team ultimately found out existing wheelchair restraints from Q’Straint used in Accessible Cars and Buses can exceed the FAA requirement of 16 G’s. They are now getting started on working with regulators such as the FAA, Airlines, Airplane Manufacturers, and Congress to see how we can make Airplanes Accessible. Being able to fly on Airplanes from the safety of your wheelchair is something the disability community has wanted for years. Their solution is for those who use electric wheelchairs, as well as properly modified Manual Wheelchairs, to independently maneuver themselves onto the plane with dignity and safety. LinkedIn: Henderson 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 Fall of 2022. LinkedIn: