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MDA Quest Podcast

MDA Quest Podcast

De : Muscular Dystrophy Association
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The official podcast for the Muscular Dystrophy Association2021 Muscular Dystrophy Association Développement personnel Hygiène et vie saine Maladie et pathologies physiques Réussite personnelle Sciences sociales
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  • 64: Episode 63 - The People Behind the People: Family Caregiving, Policy, and the Power of Showing Up

    64: Episode 63 - The People Behind the People: Family Caregiving, Policy, and the Power of Showing Up
    May 20 2026
    In this episode of the Quest Podcast, we chat with Nicole Lucas, a devoted family caregiver and dental hygienist who stepped away from her career so that her daughter could pursue her dreams; Carly Weber, a 24-year-old law student at the University of Pittsburgh living with spinal muscular atrophy (SMA) who has never let expectations define the size of her ambitions; and Shannon Wood, MDA's Director of Disability Policy, who brings both professional expertise and personal experience as a family caregiver to the conversation. Nicole opens up about the sacrifices, logistical challenges, and profound love that have shaped decades of caregiving — including making the difficult decision to leave her job when the system failed to provide adequate support during Carly's first year of law school. Carly shares what it means to build an independent life with the right support behind you, from navigating caregiver shortages and agency failures to setting her sights on a career in disability law. And Shannon pulls back the curtain on the current policy landscape, including MDA's caregiving campaign and the legislation that could finally bring meaningful relief to the millions of Americans quietly holding everything together. Together, they share their experiences, expertise, and heartfelt perspectives on partnership, advocacy, sacrifice, and why supporting family caregivers isn't just a family issue — it's a societal one.Visit https://mda.org/supportcaregivers to share your story and take action.TranscriptGuests:Carlee Weber is a 24-year-old woman living her dream. Since she was a little girl she had big plans for her future, but those plans got bolder as her confidence grew. She attended college at Pennsylvania State University, obtaining her bachelor's degree in public relations. While there, she joined a sorority, volunteered to help kids and families experiencing childhood cancer, and fought for more equitable access for students with disabilities. This sparked an interest in law, fueling her to apply to law school. Carlee just finished her second year of law school at the University of Pittsburgh, School of Law. She lives with her boyfriend and loves snuggling with her chocolate lab, Magenta.Connect with Carlee:Instagram – https://www.instagram.com/carleewithtwoes Tiktok- https://www.tiktok.com/@carleewithtwoes Nicole Lucas is a dedicated wife, mother, and grandmother. She began her career in dental hygiene in 2001 after graduating from the Pennsylvania College of Technology. She is a compassionate Dental Professional who treasures the bonds she has created with her patients and the community. Her path to becoming a family caregiver started when her youngest child was diagnosed with SMA at the age of 20 months. This was a role she took on with determination and love, always seeking to give Carlee the same life she provided for her other children. It has been an incredibly challenging yet rewarding role to watch her daughter reach heights that she never could have dreamed of for her. Nicole travels frequently between her home in Williamsport, PA and Pittsburgh, PA to support Carlee's needs as she attends law school there. She has recently become more active in the advocacy efforts of the neuromuscular disease and disability community, attending MDA 's Hill Day at the Capitol in 2025 and becoming an active member of the MDA Advocacy Team. Nicole enjoys traveling with her husband, who recently retired as a career firefighter and chief. She also leans heavily on her large support system and family at home.Shannon Wood joined MDA in 2024 as Director of Disability Policy, where she works to ensure that members of the neuromuscular community can learn, work, travel and socialize without discrimination by advancing policies that maximize our community’s access to key programs and services. Prior to joining MDA, Shannon served as Director of Advocacy and Policy at the National Multiple Sclerosis Society, where she advocated on health and disability policy issues impacting people affected by MS. She also brings experience from previous state and federal advocacy roles with the American Psychological Association.Connect with Shannon: LinkedIn - https://www.linkedin.com/in/shannonwoodvcu/ MDA Advocacy Team - 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 (SMA) type 2, when she was 15 months old and has been a life-long partner to MDA. Mindy is also a professional 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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    41 min
  • 63: Episode 62 - From Roadmap to Emmy: Samuel and Dan Habib on Filmmaking, Family, and Disability

    63: Episode 62 - From Roadmap to Emmy: Samuel and Dan Habib on Filmmaking, Family, and Disability
    Apr 8 2026
    In this Quest Podcast episode, we chat with Emmy Award-winning filmmaker and disability advocate Samuel Habib and his father and longtime collaborator Dan Habib, the creative duo behind the extraordinary documentary The Ride Ahead. In the film, Samuel opens up about his personal journey into adulthood — navigating housing, employment, relationships, and higher education while living with a rare neurodevelopmental condition — and how connecting with the disability community helped him find confidence, purpose, and his own powerful voice. Dan reflects on two decades of disability filmmaking and what it meant to finally put a person with disability in the director's chair. Together, they share the honest, often humorous, and deeply moving story behind the making of the film, the mentors who shaped it, and why authentic representation in storytelling matters now more than ever. Samuel and Dan offer their experiences, expertise, and heartfelt advice on self-advocacy, finding community, and what it really looks like to live a full and meaningful life with a disability.TranscriptGuests:Dan Habib is the Inclusive Communities Project Director at the Westchester Institute for Human Development and the founder of LikeRightNow Films. He is the Director and Producer of the films Intelligent Lives, Including Samuel, Who Cares About Kelsey?, and Mr. Connolly Has ALS. His current projects include the Emmy Award winning short My Disability Roadmap and the newly released feature documentary The Ride Ahead, both co-directed with his son Samuel Habib. Habib gave the TEDx talk, “Disabling Segregation,” and served on President Obama’s Committee for People with Intellectual Disabilities. Habib and his wife, Betsy McNamara, live in Concord, NH, and have two sons: Isaiah, 29, and Samuel, 26.To receive a free “The Ride Ahead” education kit which includes multiple versions of the film, discussion guides and bonus video content, go to https://www.rideaheadfilm.com/campprogram.Connect with Dan:Facebook: /therideahead Instagram: @therideahead Twitter: @therideaheadfilm https://likerightnowfilms.com/https://www.rideaheadfilm.com/ Samuel Habib, 26, is the Emmy Award winning co-director of the New York Times Op-Doc My Disability Roadmap and the feature documentary The Ride Ahead, both co-directed with his father Dan Habib. Samuel also helped Dan create the nationally broadcast film Mr. Connolly Has ALS. He is a college student and works at LikeRightNow Films and the Westchester Institute for Human Development. In addition to exploring his current and future academic and career options, Samuel also navigates significant, chronic health challenges. He uses a wheelchair for mobility and a communication device (as well as his voice) to express himself.Connect with Sam:Facebook: /therideahead Instagram: @therideahead Twitter: @therideaheadfilm https://likerightnowfilms.com/https://www.rideaheadfilm.com/ 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 (SMA) type 2, when she was 15 months old and has been a life-long partner to MDA. Mindy is also a professional 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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    34 min
  • 62: Episode 61 - Pizazz, Purpose, and Periodic Paralysis: How Cienna Ditri Turns Lived Experience into Advocacy

    62: Episode 61 - Pizazz, Purpose, and Periodic Paralysis: How Cienna Ditri Turns Lived Experience into Advocacy
    Mar 25 2026

    In this Quest Podcast episode, we chat with advocate, social media influencer, and President of the Periodic Paralysis Association (PPA), Cienna Ditri, who lives with periodic paralysis. Cienna shares her diagnostic journey — from childhood soccer games where something felt "off" to finally getting answers — and how living with an unpredictable condition has shaped her into a fierce and passionate self-advocate. And because style is never far from the conversation, she shares her love of adaptive fashion and how personal style has become a powerful form of self-expression and identity. Cienna shares her experiences, expertise, and advice when it comes to resilience, pizazz, and the belief that every one of us — whether in the doctor's office, on the plane, or in the fitting room — deserves to be assumed competent.

    Transcript

    Guests:

    Cienna Ditri is a rare disease advocate, social media influencer, and President of the Periodic Paralysis Association (PPA). Diagnosed with Periodic Paralysis and a handful of other rare and life-limiting diseases in her early 20s, she uses her platform to raise awareness, educate, and support others navigating life with chronic illness. With her motto, "My conditions are chronic, but my style is iconic," Cienna blends advocacy with self-expression, proving that disability does not define a person’s potential. Through her leadership at PPA and collaborations with brands like Lancome, Anthropologie, and Nurtec, she is driving change in medical research and disability representation alike. Beyond advocacy, Cienna embraces life boldly—training as a parasurfer, championing accessibility, and encouraging others that advocating for themselves and their dreams never goes out of style.

    Connect with Cienna:

    • Facebook: @chronicallypersevering
    • Instagram: @chronicallypersevering
    • TikTok: @chronicallypersevering
    • YouTube : @chronicallypersevering

    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 (SMA) type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a 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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    55 min
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