Episodios

  • 44: Episode 44 - Voting Rights and Accessibility

    44: Episode 44 - Voting Rights and Accessibility
    Oct 3 2024
    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/
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    40 m
  • 43: Episode 43 - Disrupting the Narrative

    43: Episode 43 - Disrupting the Narrative
    Jul 8 2024
    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/
    Más Menos
    47 m
  • 42: Episode 42 - Empowering Individuality with Inclusive Style

    42: Episode 42 - Empowering Individuality with Inclusive Style
    Jun 4 2024
    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
    Más Menos
    40 m
  • 41: Episode 41 - Courage Kindled: A Hero’s Unbreakable Spirit

    41: Episode 41 - Courage Kindled: A Hero’s Unbreakable Spirit
    May 1 2024
    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/
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    51 m
  • 40: Episode 40 - Unlocking Access and Inspiring Action with Sophie Morgan

    40: Episode 40 - Unlocking Access and Inspiring Action with Sophie Morgan
    Apr 19 2024
    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/
    Más Menos
    49 m
  • 39: Episode 39 - Behind the Scenes: A Look at the Science and Research for New Treatments

    39: Episode 39 - Behind the Scenes: A Look at the Science and Research for New Treatments
    Mar 14 2024
    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/
    Más Menos
    50 m
  • 38: Episode 38 - Love Made Simple, with Alexa and Jacqueline Child of Dateability

    38: Episode 38 - Love Made Simple, with Alexa and Jacqueline Child of Dateability
    Feb 12 2024
    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/
    Más Menos
    43 m
  • 37: Episode 37 - How to find Meaning and Fulfillment with Isaac Banks

    37: Episode 37 - How to find Meaning and Fulfillment with Isaac Banks
    Jan 18 2024
    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
    Más Menos
    54 m