MDA Quest Podcast

Muscular Dystrophy Association

The official podcast for the Muscular Dystrophy Association read less
Health & FitnessHealth & Fitness

Episodes

41: Episode 41 - Courage Kindled: A Hero’s Unbreakable Spirit
May 1 2024
41: Episode 41 - Courage Kindled: A Hero’s Unbreakable Spirit
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/
40: Episode 40 - Unlocking Access and Inspiring Action with Sophie Morgan
Apr 19 2024
40: Episode 40 - Unlocking Access and Inspiring Action with Sophie Morgan
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/sophiemorgan96https://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/
39: Episode 39 - Behind the Scenes: A Look at the Science and Research for New Treatments
Mar 14 2024
39: Episode 39 - Behind the Scenes: A Look at the Science and Research for New Treatments
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/
38: Episode 38 - Love Made Simple, with Alexa and Jacqueline Child of Dateability
Feb 12 2024
38: Episode 38 - Love Made Simple, with Alexa and Jacqueline Child of Dateability
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/
37: Episode 37 - How to find Meaning and Fulfillment with Isaac Banks
Jan 18 2024
37: Episode 37 - How to find Meaning and Fulfillment with Isaac Banks
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
36: Episode 36 - Wrapping Up 2023 with Leah and Amy
Dec 5 2023
36: Episode 36 - Wrapping Up 2023 with Leah and Amy
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/
35: Episode 35 - Bridging the Gap Between Intention, Action, and Community Inclusion
Nov 14 2023
35: Episode 35 - Bridging the Gap Between Intention, Action, and Community Inclusion
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/
34: Episode 34 - Job Searching, Interviewing, and Employment with a Disability
Oct 23 2023
34: Episode 34 - Job Searching, Interviewing, and Employment with a Disability
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_panelhttps://twitter.com/SDI_Disabilityhttps://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/
33: Episode 33 - Wheelchair Barbie Talks Advocacy & Inclusion
Sep 13 2023
33: Episode 33 - Wheelchair Barbie Talks Advocacy & Inclusion
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/
32: Episode 32 - Accessible Air Travel and Advocacy Updates
Aug 9 2023
32: Episode 32 - Accessible Air Travel and Advocacy Updates
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/
29: Episode 29 - Expert Accessible Travel Tips for Your Next Vacation (Travel with Sylvia & Cory)
May 15 2023
29: Episode 29 - Expert Accessible Travel Tips for Your Next Vacation (Travel with Sylvia & Cory)
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/
28: Episode 28 - There is No Such Thing as Normal
Apr 14 2023
28: Episode 28 - There is No Such Thing as Normal
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/
27: Episode 27 - The Changing Landscape of Neuromuscular Care
Mar 14 2023
27: Episode 27 - The Changing Landscape of Neuromuscular Care
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/
26: Episode 26 - Catching Up with Bill Crossland
Feb 15 2023
26: Episode 26 - Catching Up with Bill Crossland
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/
25: Episode 25 - New Year, New Mindset
Jan 17 2023
25: Episode 25 - New Year, New Mindset
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/
24: Episode 24 - Embracing Life with a Disability
Dec 15 2022
24: Episode 24 - Embracing Life with a Disability
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/
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:  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/
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: 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/