MDA Quest Podcast

In this Quest Podcast episode, we chat with Shaun Hill, MDA’s Manager of Public Policy & Advocacy and Mark Fisher, MDA’s Director of Advocacy Engagement. They join us to share the most recent voting updates, accessibility information, and expertise and advise about MDA's voting program and advocacy efforts. Please join us and make your vote count at https://mda.org/vote. Guests:  Shaun Hill currently serves as Manager, Public Policy & Advocacy for the Muscular Dystrophy Association. Ms. Hill is a veteran government relations professional, who has worked continuously in the healthcare arena, championing causes on behalf of both patients and providers, working through legislative, regulatory, and advocacy channels to impact change. In many of these roles she has led the charge on advocacy campaigns, such as MDA’s current initiative Access the Vote. A native of Washington, DC, she is a graduate of Howard University and has studied political management at George Washington University. 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 Voting - https://mda.org/vote For Local information about Voting- https://www.vote.org/ Join the Grassroots Advocacy Team - https://www.votervoice.net/MDA/register  Connect with MDA Advocacy:  advocacy@mdausa.org Host: Mindy Henderson is MDA’s Vice President of Disability Outreach & Empowerment, 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 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 the director, executive producer, and leading character of the movie Good Bad Things: Shane Stanger, Steve Way, and Danny Kurtzman respectively. This trio joins us to share their experiences, expertise, advise and hope when it comes to navigating life and Hollywood, and creating a future that is inclusive of everyone. Keep up on the latest information about the movie release at www.goodbadthings.com. Transcript Guests:  A Southern California native, Shane Stanger is a filmmaker and entrepreneur whose career began in 2009 in the ICM mailroom before spending two years as an assistant to an agent in the motion picture department. Shane went on to associate produce BERNIE, directed by Richard Linklater, starring Jack Black and Matthew McConaughey. The success of BERNIE paved the way for Shane's role as the lead producer for the independent feature Pretty Perfect. In May 2013, Shane founded and launched The Baked Bear, a dessert concept out of San Diego specializing in ice cream sandwiches. In 2016 Shane was a recipient of the Forbes 30 Under 30 Award. By 2021, Shane had opened over 35 Baked Bear locations across 12 states and decided to return to his true passion: filmmaking. Shane enrolled in the prestigious Peter Stark Producing Program at USC’s School of Cinematic Arts and received his MFA in May 2023. Good Bad Things is Stanger’s writing and directing debut and during the world premiere at Slamdance Film Festival (2024) won the audience and grand jury awards. Connect with Shane:  Instagram: @shanestanger Instagram: @goodbadthingsfilm Steve Way is a 33-year-old actor, comedian, writer, and speaker. He was born with Muscular Dystrophy and is an activist for disability rights and universal healthcare. Steve can be seen in the Hulu show RAMY and is the executive producer of the award-winning film Good Bad Things.  Connect with Steve:  Instagram: @thesteveway  www.thesteveway.com  https://thesteveway.substack.com/  Danny Kurtzman is a physically disabled model, actor, entrepreneur, and advocate for the disabled community. Diagnosed with a muscular dystrophy at a young age, Danny never let his disability stop him from doing anything he put his mind to. After graduating from LMU, he joined the family business becoming the 4th generation in the fashion industry. His passion and love for fashion drove him to creative direct, design, market, and grow multiple brands. Today Danny's passion not only lies in fashion, but in making this world a more accessible place for all disabled individuals. Danny uses his platform to spread his disability pride and tell the world that despite being physically disabled that he says “there’s nothing wrong with my body. It is perfect.” Connect with Danny:  Instagram: @dannykurtzman Host: Mindy Henderson is MDA’s Vice President of Disability Outreach & Empowerment, 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 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 the Executive Director of Open Style Lab (OSL), a non-profit organization that is on a mission to make style accessible for everyone, regardless of cognitive and physical abilities. Yasmin Keats has devoted her career to the core functions of research, education, and informing the public about inclusive design. She stresses style empowers people, bringing them joy, identity, and self-expression, and inclusion is at the heart of her work. She joins us to share her experiences, expertise, and advice. Transcript Guests:  Yasmin Keats is the Executive Director at Open Style Lab (OSL), A national design award-winning nonprofit organization initiated at MIT in 2014. OSL is dedicated to making style accessible to people of all abilities. Yasmin comes to this field with her experience of living with a physical disability. She has a background in graphic design, architecture, and creative learning. Connect with https://www.openstylelab.org/ https://www.instagram.com/openstylelab https://www.facebook.com/openstylelab/ https://www.linkedin.com/company/open-style-lab/ Host: Mindy Henderson is MDA’s Vice President of Disability Outreach & Empowerment, 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 retired US Army veteran and firefighter, Ken Sutcliffe and his wife, Andi. He has devoted his career to saving lives but now he must also fight for his own after being diagnosed with Amyotrophic lateral sclerosis, or ALS, also known as Lou Gehrig's Disease, He and his wife join us to share their experiences, advice and stories of resilience and positivity. To view a full list of clinical trials, you may be eligible for, go to https://www.mda.org/research/clinical-trials Transcript Guests:  Ken Sutcliffe is a retired US Army veteran and a Dallas, Texas firefighter. He joined the military at age 17 and the Dallas Fire Department in 1987. He met his wife, Andi, of 13 years while helping her move and eventually they worked together on the Texas Task Force One statewide urban search and rescue team. He retired in June 2020 after 33 years of service. He began to show symptoms of ALS during the summer of 2020 and was diagnosed in November 2021.  Connect with Ken and Andi: https://www.facebook.com/dallas.firefightersassoc Host: Mindy Henderson is MDA’s Vice President of Disability Outreach & Empowerment & 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 world-renowned advocate, entrepreneur, TV personality and producer, Sophie Morgan. She devotes her time and expertise to create inclusive spaces for those with disabilities and deliver advice, inspire action, and make us feel closer together while sharing stories of resilience and positivity. Sophie is a co-founder of Making Space Media, a production company that focuses on increasing representation in TV and film, and a leader in the global disability rights campaign “Rights on Flights”. She joins us to share her experiences, expertise, and advice. Transcript Guests:  Sophie Morgan is a 38-year-old BAFTA nominated TV presenter, producer, writer, disability rights advocate, and artist. Paralyzed in an automobile accident when she was 18 years old, Sophie became one of the first female wheelchair users globally to host on television and is transforming the representation of disability on screen. Sophie can be seen anchoring live sports, including the Paralympics, fronting in her own prime-time travel series and hard-hitting current affairs documentaries, and as a regular panelist for ITV’s Loose Women. She recently co-founded Making Space Media with Keely Cat Wells. Making Space Media, a production company that focuses on increasing representation in TV and film, recently contracted with Reese Witherspoon’s media company Hello Sunshine. Named one of the top 10 influential disabled people in the UK, her advocacy work includes serving on the advisory boards for Human Rights Watch, speaking at the United Nations, spearheading the global disability rights campaign “Rights on Flights”, serving as a Can-Am global ambassador, writing a monthly column for Conde Nast Traveler, and much more. Connect with Sophie: https://making-space.com/ https://rightsonflights.com/ https://www.instagram.com/sophlmorg/ https://www.sophiemorgan.com/ https://twitter.com/sophiemorgan96 https://www.facebook.com/SophMorg/ https://www.linkedin.com/in/sophie-morgan-b05a0671/ Host: Mindy Henderson is MDA’s Vice President of Disability Outreach & Empowerment & 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 geneticist, Dr. Jeffrey Chamberlain and the Chief Research Officer of the Muscular Dystrophy Association, Dr. Sharon Hesterlee. Both have devoted their time and expertise to create and move forward research and treatments for neuromuscular diseases. Their goal is to create successful treatments and eventually a cure for those effect by neuromuscular diseases. These specialists join us to share their experiences, expertise, and advice. Transcript Guests:  Dr. Jeffrey Chamberlain is a geneticist with expertise in the muscular dystrophies, and is currently a professor of neurology, medicine and biochemistry at the University of Washington School of Medicine, director of the Wellstone Muscular Dystrophy Specialized Research Center, and the McCaw Endowed Chair in Muscular Dystrophy. He is also current president of the American Society for Gene and Cell Therapy. Research in the Chamberlain lab focuses on understanding the molecular basis of, and developing treatments for, the muscular dystrophies with a focus on gene therapy. His group invented ‘micro-dystrophin’ and discovered that vectors derived from AAV can be used for bodywide, systemic gene delivery to muscle. Several of his vector designs are being tested in human clinical trials for Duchenne muscular dystrophy. Connect with Dr. Chamberlain: https://sites.uw.edu/chamblab/home/ https://www.seattlemuscle.org Dr. Hesterlee is Chief Research Officer of the Muscular Dystrophy Association. She has over 20 years of experience in neuromuscular research in both the nonprofit and industry space, where she has served variously as head of research, project lead and CEO. She has been involved in numerous efforts to remove barriers to therapy development for rare disease and foster interactions between patient advocacy groups and industry. She received her Ph.D. in neuroscience from the University of Arizona in 1999. Connect with Dr. Hesterlee: https://www.linkedin.com/in/sharon-hesterlee/ Host: Mindy Henderson is MDA’s Vice President of Disability Outreach & Empowerment & 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 the founders of Dateability, a dating app geared towards individuals with disabilities and chronic illnesses. Alexa and Jacqueline Child have devoted their time to create a safe and accepting space that allows individuals to create meaningful connections. Their goal is to make love accessible for everyone. These ladies join us to share their experiences, expertise, and advice. Transcript Guests:  Alexa Child, co-founder of Dateability, graduated from Georgetown Law in 2015 and currently works as a public interest attorney. Through witnessing her sister’s experience with disability, Alexa has become an advocate and ally for the disability community. She is passionate about social justice, enjoys TV and film, and loves all things Halloween. Jacqueline Child, co-founder of Dateability, has turned her experience with disability and chronic illness into a new venture. She created Dateability with her sister after years of discouraging ableist experiences on the mainstream dating apps. When she isn’t managing her health, Jacqueline enjoys playing the guitar, reading, and spending time with her family and dogs. Connect with Dateability: Instagram: https://www.instagram.com/dateabilityapp/ TikTok: https://www.tiktok.com/@dateability Facebook: https://www.facebook.com/dateabilityapp Info Page: https://info.dateabilityapp.com/ iOS: https://apps.apple.com/us/app/dateability/id6443474660 Android: https://play.google.com/store/apps/details?id=com.dateabilityapp&hl=en&gl=US Web App: https://www.dateabilityapp.com/login Host: Mindy Henderson is MDA’s Vice President of Disability Outreach & Empowerment, 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 one of Muscular Dystrophy Association’s Ambassadors, Isaac Banks about finding fulfillment in our lives as we skyrocket into 2024. As a certified public speaker, author, and podcaster, he has devoted his career to providing equity and inclusion for others and finds personal fulfillment through his faith and mindfulness. He joins us to share his experiences, expertise, and advice. Transcript Guests: Isaac Banks has many obstacles that could stop him, but muscular dystrophy isn’t one of them. At age 8, Isaac was misdiagnosed as having Duchenne muscular dystrophy by a family doctor. When he was 21, doctors noticed Isaac’s diagnosis wasn’t progressing as expected. After contacting MDA, he was tested and the results revealed that he was actually living with limb girdle muscular dystrophy. Isaac has since found a successful career in corporate America. He is a talented public speaker and has designed a comprehensive Diversity, Equity, and Inclusion program, as well as a Servant Leadership for Management program. Over the years, Isaac participated in various programs provided by MDA, including Summer Camp and speaks about the profound ways that Summer camp set him up for success in life and molded him into the deeply fulfilled person he is today, spending as much time as he can giving back. Connect with Isaac: Facebook: IsaacDBanks LinkedIn: isaac-d-banks Apple Podcast: Man vs Wheelchair PodBean: Man vs Wheelchair Host: 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: hendersonmindy Instagram: mindyhendersonspeaks

In this Quest Podcast episode, we chat with Muscular Dystrophy Association’s National Ambassadors, Leah Z., and Amy Shinneman. Amy feels that connecting and sharing her story with others through MDA has been life changing. Leah is a dedicated advocate that feels it is important to advocate for yourself and stand up for those that are not able. These ladies join us to share their experiences, expertise, and advice. Transcript Guests: Amy lives with a type of muscular dystrophy called Bethlem myopathy. She has had symptoms since birth but did not receive a diagnosis until she was 44 years old - thanks to genetic testing. She is the mom of two boys who are in college and high school. She enjoys painting with acrylics and oils, cooking, baking, reading and exercising. She also enjoys training for marathons with her husband, Jamie, who pushes her in her duo bike. They have competed in multiple marathons together. Connect with Amy:  Facebook: amy.l.shinneman Instagram: @ashinneman Leah is 16 years old and was born with an ultra-rare form of neuromuscular disease. She is an accomplished actress, dancer, model and adaptive athlete. She has danced on the Lincoln Center stage, walked in New York Fashion Week...twice, and appeared in the Jennifer Lopez movie, Marry Me. Connect with Leah: Instagram: @leahj.zelaya Host: 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 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/