MDA Quest Podcast

In this Quest Podcast episode, we chat with the Director of Marketing and Communications at Idealist.org, President for New York Women in Communications (NYWICI) and host of the NYWICI WomenHeard Changemakers podcast. Georgia Galanoudis had devoted her career to deliver advice, inspire action, and make us feel closer together while sharing stories of resilience and positivity. She joins us to share her experiences, expertise, and advice. Transcript Guest: Throughout her career Georgia Galanoudis has been exploring content’s ability to educate, inspire and build community. As the Director of Marketing and Communications at Idealist.org, Georgia and her team deliver the support and access needed to help individuals reach their full social-impact potential. She uncovers authentic and compelling stories that deliver advice, inspire action, and make us feel closer together. During her career, Georgia has managed marketing solution agencies within large publishers, such as Time Inc. She ran the strategy practice for a full-service digital agency and led new business efforts for best-in-breed content agencies. At the Healthcare Information and Management Systems Society (HIMSS), as Head of Media and then as Chief Experience Officer, Georgia helped ensure the HIMSS member community had access to the tools and connections necessary to realize the mission of reforming the global health ecosystem. As an experienced board director, Georgia currently serves as President for New York Women in Communications (NYWICI). She is the host of the NYWICI WomenHeard Changemakers podcast, where you can hear communications industry leaders share personal stories of resilience and positivity in the face of challenging transition. Connect with Georgia: LinkedIn: https://www.linkedin.com/in/georgiagalanoudis/                 https://www.linkedin.com/company/idealist.org/ Facebook: https://www.facebook.com/Idealist X (formerly known as Twitter): https://twitter.com/idealist Instagram: https://www.instagram.com/idealist_org/ TikTok: https://www.tiktok.com/@idealist_org Mindy Henderson is the Senior Director & Editor-in-Chief of Quest Media, 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 author of the book, The Truth About Things That Suck. Connect with Mindy: LinkedIn: https://www.linkedin.com/in/hendersonmindy/ Instagram: https://www.instagram.com/mindyhendersonspeaks/

In this Quest Podcast episode, we chat with a distinguished business leader from the St. Louis area, who lives with physical disabilities. Lori Becker, CEO of Starkloff Disability Institute, has devoted her career to promoting diversity and inclusion both in the workplace and in the community. She joins us to share her experiences, expertise, and advice in recognition of National Disability Employment Month.  If you would like to get involved in advocating for policy issues related to employment for individuals with disabilities, please go to https://www.mda.org/get-involved/advocacy for information about the MDA Grassroots Advocacy Team. Transcript Guest:  Lori Becker joined the Starkloff Disability Institute in 2013 as Director of Development and Communications.  With her influence, the Institute has grown by leaps and bounds. Lori was named to the 2020 class of Diverse Business Leaders by the St. Louis Business Journal.  One of 20 leaders selected from a pool of more than 90 nominees, she was featured in a September issue of the Business Journal where she was recognized for her efforts to promote diversity and inclusion both in the workplace and in the community. The Board of Directors named LoriCEO in 2023.  Like many Starkloff employees, Lori has a disability.She is legally blind due to a genetic disorder called Stargardt’s Disease.  Connect with Lori:  https://www.facebook.com/StarkloffDisabilityInstitute/?ref=aymt_homepage_panel https://twitter.com/SDI_Disability https://www.instagram.com/starkloffdisability/ https://starkloff.org/ Mindy Henderson is the Senior Director & Editor-in-Chief of Quest Media, 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 author of the book, The Truth About Things That Suck. Connect with Mindy:  LinkedIn: https://www.linkedin.com/in/hendersonmindy/      Instagram: https://www.instagram.com/mindyhendersonspeaks/

In this Quest Podcast episode, we chat with a renowned journalist, model and disability rights activist, who lives with physical disabilities. Madison Lawson, who has been featured in publications including Vogue, Glamour, Teen Vogue, Allure and brands like Sephora, PrettyLittle Thing, and Olay, joins us to share her experiences, expertise, and advice when it comes to navigating life. Transcript Guests: Madison Lawson is a journalist, model and disability rights activist. Her written works have been featured in publications including Vogue, Glamour, Teen Vogue, Allure and more. Lawson’s advocacy work has gotten her featured in campaigns with brands like Sephora, PrettyLittle Thing, and Olay. Her greatest inspiration is the work and legacy of her late friend and the mother of the disability rights movement Judy Heumann who laid the groundwork for disabled people around the world to be better integrated into society. Heumann’s work included organizing and carrying out the longest non-violent occupation of a federal building to get legislation like 504 and the Americans with Disabilities Act passed, igniting the disability pride movement that has empowered generations of disabled people around the world. Lawson hopes to give representation to her younger self who never saw people who looked like her shown in a positive light in media, and to be one of the many voices pushing the needle of inclusion forward for people with disabilities. Instagram: https://www.instagram.com/wheelchairbarbie/ TikTok: https://www.tiktok.com/@wheelchairbarbie LinkedIn: https://www.linkedin.com/in/madison-lawson-978a63112/ Mindy Henderson is the Senior Director & Editor-in-Chief of Quest Media, 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 author of the book, The Truth About Things That Suck. Connect with Mindy: LinkedIn: https://www.linkedin.com/in/hendersonmindy/ Instagram: https://www.instagram.com/mindyhendersonspeaks/

In this Quest Podcast episode, we chat with Mark Fisher, MDA’s Director of Advocacy Engagement and Michael Lewis, MDA’s Director of Disability Policy, an advocate who lives with physical disabilities. They join us to share the most recent air travel updates, advocacy information, and expertise and advise about MDA's grassroots program and advocacy volunteer efforts. Please join us and make your voices heard about making air travel accessible at mda.org/airtravel. Transcript Guests: Mark Fisher is the Director of Advocacy Engagement at the Muscular Dystrophy Association. In this role, Mark leads MDA’s grassroots program and advocacy volunteer efforts. He works to empower advocates and connect them with key decisionmakers in order to advance public policies that improve the lives of the neuromuscular disease community. He previously served as the Digital Grassroots Manager at the American Heart Association and was also a field organizer on a U.S. Senate campaign. Mark earned his Master of Public Policy from American University and is originally from Pittsburgh, PA. For Information About our Advocacy Efforts - https://www.mda.org/get-involved/advocacy Join the Grassroots Advocacy Team - https://www.votervoice.net/MDA/register 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, 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. Mindy Henderson is the Senior Director & Editor-in-Chief of Quest Media, 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 author of the book, The Truth About Things That Suck. Connect with Mindy: LinkedIn: https://www.linkedin.com/in/hendersonmindy/ Instagram: https://www.instagram.com/mindyhendersonspeaks/

In this Quest Podcast episode, we chat with Brooke Eby, who was diagnosed with ALS in March 2022. Brooke Eby was recently featured on the Today Show, and with almost 70,000 followers on Instagram alone hopes to spread awareness of ALS to as many people as possible. Transcript Guests: Brooke is a social media influencer who was recently featured on the Today Show. She was diagnosed with ALS in March 2022 after four years of confusing symptoms in her leg. She hopes to spread awareness of ALS to as many people as possible and laugh along the way. Tiktok: @LimpBroozkit Instagram: @LimpBroozkit Twitter: @LimpBroozkit Mindy Henderson is the Senior Director & Editor-in-Chief of Quest Media, 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: https://www.linkedin.com/in/hendersonmindy/ Instagram: https://www.instagram.com/mindyhendersonspeaks/

In this Quest Podcast episode, we chat with a renowned comedian, writer, and advocate who lives with physical disabilities. Steve Way, actor of the Hulu Original “Ramy”, joins us to share his experiences, expertise, and advise when it comes to navigating life and Hollywood. Transcript Guests:  Steve is a 32-year-old actor, comedian, writer, and speaker. He was born with Ullrich Congenital Muscular Dystrophy and is an advocate for disability awareness. Steve performs stand-up comedy and motivational speeches around the country and can be seen on the Hulu show Ramy. Instagram - https://www.instagram.com/thesteveway/ Website - https://www.thesteveway.com/ Substack - https://thesteveway.substack.com/ Mindy Henderson is the Senior Director & Editor-in-Chief of Quest Media, 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: https://www.linkedin.com/in/hendersonmindy/ Instagram: https://www.instagram.com/mindyhendersonspeaks/

Summer is around the corner! In this Quest Podcast episode, we chat with two renowned travel writers who live with physical disabilities. Sylvia Longmire, creator of the Spin the Globe accessible travel blog, and Cory Lee, creator of the Curb Free with Cory Lee travel blog, join us to share their experiences, expertise, and advice when it comes to accessible travel. Transcript Guests:  Sylvia Longmire is an award-winning accessible travel writer and photographer, a service-disabled Air Force veteran, and the former Ms. Wheelchair USA 2016. She travels around the world, usually solo, in her power wheelchair to document the accessibility of her destinations through articles, photography, and video. Sylvia is also a director, producer, voice actor, and a staunch advocate for accessibility and disability representation. She is the author of four accessible travel books and the creator of the Spin the Globe accessible travel blog. After being diagnosed with spinal muscular atrophy at the age of two, Cory Lee’s thirst for adventure never ceased. He has traveled across all seven continents in his powered wheelchair while managing to run his travel blog CurbFreeWithCoryLee.com, where he shares his accessible — and sometimes not so accessible — travel adventures with others. He is a four-time Webby Award winner, has won two Lowell Thomas Awards for Best Travel Blog, and he has written for publications such as Condé Nast Traveler, National Geographic, and Lonely Planet. As always, his goal is to inspire other wheelchair users to roll out of their comfort zones and see all of the beauty our world has to offer. Connect with Sylvia:  Facebook - https://www.facebook.com/spintheglobeonwheels Instagram - https://instagram.com/sylvia_longmire Blog - https://www.spintheglobe.net sylvia@spintheglobe.net Connect with Cory:  Blog - https://curbfreewithcorylee.com Instagram - https://instagram.com/curbfreecorylee Facebook - https://facebook.com/CurbFree Mindy Henderson is the Senior Director & Editor-in-Chief of Quest Media, 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: https://www.linkedin.com/in/hendersonmindy/ Instagram: https://www.instagram.com/mindyhendersonspeaks/

Megan DeJarnett is an author, speaker, disability DEI educator, and inclusion advocate. Megan lives with SMA and is the organizational founder of No Such Thing, a company with a mission to help others redefine purpose by removing defining labels. Author of the children's books, "No Such Thing as Normal" and "Lovely as Can Be", Megan teaches children the ways in which everyone is unique and that our differences are what make us special. She joins the Quest Podcast to talk about the importance of inclusion and to share her goal of spreading her life mission of living without limits through her books, public speaking, and writing. Transcript Megan DeJarnett is an author, speaker, disability DEI educator, and inclusion advocate. At the age of two, she was diagnosed with SMA and has used a wheelchair ever since. Megan is determined to experience life to the fullest and choose joy over despair. She is passionate about motivating others to approach life with an ‘I can do this' attitude. Her ability to share her story and encourage others to look at life through a new lens is only one of her tremendous gifts. Megan has been placed in unique situations and has had to overcome innumerable challenges. She didn't think too much about her differences until she became the mother of a child with special needs. Megan then found herself frequently having to answer questions about her child's own differences. This spawned a passion in Megan for teaching children the ways in which everyone is unique and emphasizing the ways in which that singularity makes them special. In 2020, she self-published her first children's book, "No Such Thing as Normal". It's written to underscore the importance of inclusion and acceptance. Accompanying her book is a self-published coloring book, and her follow up, "Lovely as Can Be", which she has expanded into four volumes. Megan hopes to spread her life mission of living without limits through her books, public speaking and writing to those in the disability community and beyond! Connect with Megan: Instagram: @megandejarnett Instagram: @nosuchthing.co Website: https://megandejarnett.co/ Website: https://nosuchthing.co/ 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/

As new treatments, cutting edge research, and a better understanding of genetic sequencing and mutations bring innovative change to the treatment landscape for neuromusclar disease, understanding your options and accessing care is more important than ever. We sit down with Dr. Matthew Harms, a neuromuscular neurologist and neruogenetics expert, to discuss what these changes mean to our community as he shares his advice, insights, and expertise on the changing landscape of neuromuscular care. Transcript Guests: Dr. Matthew Harms is a neuromuscular neurologist and neurogenetics expert focused on ALS and related motor neuron diseases.  Dr. Harms' lab applies cutting-edge genetic sequencing technologies to discover new genes, define the frequency and range of genetic mutations in ALS, and characterize links between specific mutations and specific types or manifestations of ALS.  He is the Director of Precision Medicine Initiatives at Columbia University, Director of the Neurogenetics Program in the Department of Neurology, and Associate Director of the Eleanor and Lou Gehrig ALS Center.  Dr. Harms also serves as a Medical Advisor to the MDA. 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/

For our February Valentine's Day Quest Podcast, we catch up with Bill Crossland, a writer, director, producer, and actor who lives with muscular dystrophy. Bill shares his insights and experiences with our live audience as we chat about dating with a disability, love, relationships, and his feature-length-film "Catching Up". His movie is available to stream on for free on Tubi and Amazon Prime. You can watch the official trailer here: https://www.youtube.com/watch?v=0QrNnmlVqaI. (Note: "Catching Up" is for mature audiences and contains language and some sexual content.) Transcript Guests: Bill Crossland is a writer, director, producer, and actor. A lover of movies since childhood, Bill earned his degree in Film & Media Arts from Temple University in Philadelphia. His work has screened at the Sundance, Heartland, New Orleans, and Atlanta film festivals, and he was named one of Scriptapalooza's Top 100 screenwriters of 2022. Bill's feature directorial debut Catching Up -- an ‘80s style romantic comedy about a man with muscular dystrophy who falls in love with an able-bodied woman -- was picked up by Freestyle Digital Media for worldwide distribution and is now available on DVD and streaming from Amazon Prime, iTunes, and more. You can check out the film's website here: catchingupmovie.com Connect with Bill:  Twitter: @Just_Plain_Bill 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/

 We are excited to start a new year talking about new mindsets, especially when it comes to adversity. On our first episode of 2023, Mindy talks mindset with Jose Flores, who lives with spinal muscular atrophy, in front of a live audience. Jose is a professional speaker, "mindset disruptor," and #1 best-selling author of “Don't Let Your Struggle Become Your Standard." Jose speaks all over the world, sharing his experience of growing up with a physical "disability" and how you can use the power of your mind to overcome anything that life throws your way. Transcript Guests: Jose Flores is a corporate speaker, Global Motivator, Mindset Disruptor, and #1 best-selling author. Jose speaks all over the world using his unique story of growing up with a physical "disability" and how you can use the power of your mind to overcome anything life throws your way. His main message is to never allow your struggle to become your standard and how to dominate your life and business. Jose lives with spinal muscular atrophy. Find Jose's book Don't Let Your Struggle Become Your Standard on Amazon Connect with Jose:  Facebook: https://www.facebook.com/JoseInspires Instagram: https://www.instagram.com/joseinspires/ LinkedIn: https://www.linkedin.com/in/josefloresinspires/ Twitter: https://twitter.com/joseinspires TikTok: https://www.tiktok.com/@joseinspires YouTube: https://www.youtube.com/joseinspires Website: https://www.joseinspires.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 book stores in Summer of 2022. Connect with Mindy: LinkedIn: https://www.linkedin.com/in/hendersonmindy/ Instagram: https://www.instagram.com/mindyhendersonspeaks/

On this episode of Quest podcast, we join forces with hosts of the popular podcast "Embrace It," Estela Lugo and Lainie Ishbia. Both women live with Charcot Marie Tooth (CMT) and are active with the Hereditary Neuropathy Foundation, raising awareness and offering support to their community. Estela and Lainie bring their incredible chemistry and personality to our discussion on living with a disability, parenting, business, fashion, their podcast and workshops, and their over-arching goal to rebrand disability and empower others. Check out Lainie and Estela's Podcast and Workshops: Embrace It on Instagram, LinkedIn, or the Embrace It website. Transcript Guests: Lainie Ishbia is a Tedx speaker, writer, entrepreneur, and disability advocate born with a rare and progressive neuromuscular disorder called Charcot-Marie-Tooth Disease (CMT). Although Lainie wears leg braces to help her walk and cannot button up a shirt to save her life, she refuses to let her disabilities stop her and has made it her life's mission to empower others with disabilities to do the same. After receiving a master of social work degree from the University of Michigan, Lainie spent most of her 30+ year career specializing in adolescent girls and women's self-esteem and body image issues. As a self-proclaimed fashionista and disability hack expert, Lainie founded the lifestyle and fashion brand Trend-Able in 2017 where she has helped thousands of other people living with disabilities to embrace their challenges, focus on their strengths, and discover adaptive fashion and other tools for looking and feeling their best. Lainie is the co-creator of the Embrace It Podcast and the EmBrace It Workshop Series. She has partnered with numerous nonprofits, businesses, and Fortune 500 companies to train employees on disability related communication and to eradicate micro-aggressions and negative stereotypes of people with disabilities in the workplace. Connect with Lainie: LinkedIn: https://www.linkedin.com/in/lainie-ishbia-b5a89a16/ Instagram: https://www.instagram.com/trend.able/ Facebook: https://www.facebook.com/LainieIsh Estela Lugo was diagnosed with Charcot-Marie-Tooth (CMT) at four years old, followed by her younger sister two years later. In 2002, she graduated from FIT with a Bachelor's in Interior Design. Today, her professional background in design, marketing, trend-forecasting, and creative direction brings an unexpected approach to connecting the disability community to wellness, empowerment, and health. After volunteering for eight years, Estela joined the Hereditary Neuropathy Foundation full-time in 2018 as their Program Development Manager. Later in 2018, she testified in front of the FDA on the patient experience and the importance of funding CMT studies and potential therapies. As moderator for the CMT-Connect webinar series, Estela enjoys sharing resources and expert information with the CMT community on a wide range of valuable topics. On the EmBrace It Podcast, she interviews community thought leaders and aims to empower women living with disabilities in all facets of life. Estela and co-host Lainie Isbia also provide original inclusions workshops that focus on improving advocacy & DEI through communication tools, starting with "How to Communicate with Anyone About Disability." They've worked with many top brands such as Levi Strauss, Pinterest, Lockheed Martin, The Abilities Expos, SUNY Farmingdale College, Health Union, and more. In 2019, Estela gave her first TEDx talk titled "RePurpose Your Pain" on the art of turning adversity into life's most beautiful work. She currently co-teaches inclusive and adaptive design at the Fashion Institute of Technology for their Design for Social Impact program. She is represented by Gamut Management, an all-inclusive talent agency. Connect with Estela:  LinkedIn: https://www.linkedin.com/in/estelalugo/ Connect with the Herediary Neuropathy Foundation: Facebook: https://www.facebook.com/HereditaryNeuropathyFoundation Website: https://www.hnf-cure.org/ 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: https://www.linkedin.com/in/hendersonmindy/ Instagram: https://www.instagram.com/mindyhendersonspeaks/

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:  https://www.airlines.org/news/u-s-airlines-strengthen-commitment-to-passenger-accessibility/  Learn how you can get involved with MDA’s advocacy initiatives: https://www.mda.org/get-involved/advocacy Transcript Guests: Kelly 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: https://www.linkedin.com/company/usdot/ Facebook: https://www.facebook.com/USDOT  Twitter: https://twitter.com/USDOT https://www.transportation.gov/  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: https://www.linkedin.com/in/michael-lewis-575a029/ Twitter: @MichaelKLewis, @MDA_Advocacy https://www.mda.org/advocacy 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/

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: https://www.linkedin.com/in/sarahlawlor/ E-mail: 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: https://www.linkedin.com/in/hendersonmindy/     Instagram: https://www.instagram.com/mindyhendersonspeaks/  

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: https://www.mda.org/lets-play Twitch: 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: https://www.linkedin.com/in/larrylieberman/ https://twitter.com/liebermanlarry 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: https://www.linkedin.com/in/kennysmall/ https://twitter.com/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: https://linktr.ee/keepcharliemoving 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: https://www.linkedin.com/in/hendersonmindy/  Instagram: https://www.instagram.com/mindyhendersonspeaks/

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: 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. 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/

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/

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/

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/