Épisodes

  • 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
  • 61: Episode 60 - Fashion for Every Body: Izzy Camilleri on Style, Function, and Inclusion

    61: Episode 60 - Fashion for Every Body: Izzy Camilleri on Style, Function, and Inclusion
    Feb 24 2026

    In this Quest Podcast episode, we chat with internationally recognized fashion designer Izzy Camilleri, a true pioneer in adaptive fashion. She shares how her successful career in high-end fashion took a transformative turn when she began designing clothing for people with disabilities and partnered with Silverts—work that helped ignite today’s adaptive fashion movement. Izzy shares how to balances style with function, the importance of universal design, and the meaningful progress that the fashion industry has (and hasn’t) made toward true inclusion. Izzy shares her experiences, expertise and advice when it comes to what the future holds for adaptive apparel, customization, and technology as she shines a light on the power of fashion to help people feel seen, confident, and fully themselves.

    Transcript

    As an additional treat for you, our friends at Silverts and IZ Adaptive are offering a limited-time 15% discount on purchases over $50 for the MDA community! For Silverts, shop here, and for IZ Adaptive, shop here for your discounts.

    Thank you, Silverts and IZ Adaptive!

    Guests:

    Izzy Camilleri is one of Canada’s leading and most celebrated fashion designers, and a pioneer in adaptive clothing. Izzy first ventured into the world of accessible clothing after initially doing custom work for a wheelchair user in 2004. It opened her eyes to the huge necessity for this type of clothing in the world. In 2022, Izzy received 2 awards for her adaptive line. She won the Innovation Award from the Women’s Empowerment Awards and the Fashion Impact Award from the CAFA Awards. In 2006, she received CAFA’s Womenswear Designer of the Year Award. Her adaptive line has been featured in the Royal Ontario Museum. For more than 39 years, she has designed custom clothing for an international clientele, crafted gorgeous collections featured in fashion magazines from Vogue to InStyle, and dressed celebrities like Daniel Radcliffe, Mark Wahlberg, Meryl Streep, Angelina Jolie, and David Bowie. Since 2009, Izzy has focused on inclusive fashion through her brand IZ Adaptive, with the mission to make great looking and well-fitting clothes accessible to everyone.

    Connect with Izzy:

    • Website- https://izadaptive.com/
    • Facebook – https://www.facebook.com/izzy.camilleri.9/
    • Instagram – https://www.instagram.com/izzy.camilleri/?hl=en

    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 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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    39 min
  • 60: Episode 59 - Redesigning the Day: Accessibility and Mindset Life Hacks with Jax Cowles

    60: Episode 59 - Redesigning the Day: Accessibility and Mindset Life Hacks with Jax Cowles
    Jan 20 2026

    In this Quest Podcast episode, we chat with public speaker, consultant, and disability advocate, Jax Cowles. Jax shares an honest, thoughtful, and deeply creative conversation about daily life, independence, and problem-solving. She opens up about how creativity and “life hacking” became essential tools rather than optional skills, and how small, low-cost adaptations can completely transform everyday tasks. Jax shares her experiences, expertise, and advice when it comes to practical insight, encouragement, and a refreshing perspective on living creatively and fully—exactly as you are.

    Transcript

    Guests:

    Jax Cowles is a speaker, consultant, and disability advocate who uses her unique perspective and experience in creative storytelling, organizational strategies, and her expertise in architectural and fashion style/design to break the barrier between fearing versus embracing disability.

    Diagnosed with spinal muscular atrophy (SMA) at 20-months old, Jax began sharing her story at a young age, speaking at schools and events to show it’s OK to be different. From her early school days, to a 2024 Keynote Gala speaker, Jax has always been a proud member of MDA.

    Through her travels to cities like London, Paris, and Amsterdam; Jax highlights accessibility around the world and encourages others that nothing is impossible when you’re the writer of your own story. She believes accessibility should never be a question and that with the right tools, information, and mindset, we can build a more inclusive world—not just by thinking outside the box, but by breaking the box

    Connect with Jax:

    • https://www.jaxcowles.com/
    • https://www.youtube.com/channel/UCVhqq8GaKYLmFs-v4xQjkrw
    • https://www.instagram.com/jaxcowles/
    • https://www.facebook.com/jaxcowles
    • https://www.pinterest.com/jax_cowles/
    • https://www.linkedin.com/in/jacquelynncowles/
    • https://x.com/jaxcowles

    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 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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    58 min
  • 59: Episode 58 - Wrapping up 2025 with Ira and Lily

    59: Episode 58 - Wrapping up 2025 with Ira and Lily
    Nov 26 2025
    In this Quest Podcast episode, we chat with Muscular Dystrophy Association’s National Ambassadors, Lily S. and Ira Walker. Lily is a dedicated advocate finishing her first year as a National Ambassador. She shares her journey, why she believes it is important to advocate for yourself and others, and what she has learned along the way. As Ira wraps up his second year as a National Ambassador and prepares to start a career as a published author, he chats about how connecting with his community and sharing his story with others through MDA has been life-changing. These National Ambassadors join us to share their experiences, expertise, and advice.

    Transcript

    Guests:

    Lily Sander is 18 years old and lives with Charcot-Marie-Tooth (CMT) disease. Her passions include disability advocacy, female justice advocacy, and accessible education. She enjoys traveling with her family, having a good cup of coffee, and spending time with her dogs. Her hope is to inspire others to embrace a positive outlook(even in the face of adversity), encourage individuals to advocate for themselves and others, and make a meaningful impact on the world.

    Connect with Lily:

    • LinkedIn: https://www.linkedin.com/in/lily-sander-89b75a274/
    • Instagram: @la.sander / https://www.instagram.com/la.sander/
    Ira Walker is 39 years old and lives with spinal muscular atrophy (SMA). He’s an avid sports fan, cultural connoisseur of the arts, and an impressive cook who is constantly evolving his culinary abilities. He describes himself as a highly independent and active gentlemen who is living his dream and best life in south Florida while working an exciting career in HR. Ira loves exploring the sights and sounds of his environment in his sophisticated modified van.

    Connect with Ira:

    • Facebook –https://www.facebook.com/IraWalker321
    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 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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    44 min
  • 58: Episode 57 - Voices of Inclusion: Celebrating NDEAM with Disability:IN

    58: Episode 57 - Voices of Inclusion: Celebrating NDEAM with Disability:IN
    Oct 21 2025
    October is National Disability Employment Month (NDEAM). In this month’s episode of the Quest podcast, we dive into accessibility and inclusion in the workforce with Russell Shaffer, the Executive Vice President of Strategy & Programsat Disability:IN. Drawing on his lived experience of vision loss and his years of working in corporate diversity, equity, and inclusion, Russell shares how businesses can move from compliance to strategic disability inclusion, the power of measurement and benchmarking, and how individuals with disabilities and organizations alike can lead the change. He shares his expertise and advice as we discuss creating inclusive workplaces, what’s next in the field of disability inclusion, and how we can all play a role in advancing employment and empowerment.

    Transcript

    Guests:

    Russell Shaffer is the Executive Vice President ofStrategy & Programs at Disability:IN, where he has responsibility for the development and implementation of the organization’s strategic plan, along with the measurement and reporting of its key performance indicators. In addition, Russell and his team lead signature Disability:IN programs, including Accessibility, Disability Equality Index, Learning & Workforce Development, NextGen Leadership, and Supplier Diversity. He joined Disability:IN in October 2022 from Walmart Inc. where he most recently was Senior Director ofGlobal Culture, Diversity, Equity & Inclusion (CDEI). Russell currently serves on the Board of Trustees for the American Printing House for the Blind (APH) in Louisville, Kentucky, and his board service includes prior terms with Sources for Community Independent Living in Fayetteville, Arkansas, and the American Foundation for the Blind (AFB). His AFB service included a two-year term as Chair of the Board, and in 2015 he received the AFB Stephen Garff Marriott award in recognition of his professional achievement and service as a person who is blind or low vision. While at Walmart, he served two terms as Chair of the company’s inABLE Associate Resource Group, and in 2018, he traveled to China as a private-sector disability employment expert as part of a U.S. State Department delegation. Disability:IN honored Russell as the 2019 recipient of the annual John D. Kemp Leadership Award in recognition of his commitment to advancing disability inclusion inside Corporate America. He is an honors graduate of Malone University in Canton, Ohio, and holds dual Bachelor of Arts degrees in business administration and communication arts. Russell resides in Rogers, Arkansas, with his wife, Jessica, and their children, Sophia and Brady. His perspectives on disability advocacy and inclusion are informed by his experiences with retinitis pigmentosa, a genetic, degenerative eye disease that was diagnosed when Russell was 10 years old and led to his legal blindness by his late 20s.

    Connect with Russell Shaffer:

    • https://disabilityin.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 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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    58 min
  • 57: Episode 56 - Precision Medicine: Mapping the Genetic Code for New Treatments

    57: Episode 56 - Precision Medicine: Mapping the Genetic Code for New Treatments
    Sep 23 2025
    In this Quest Podcast episode, we chat with clinicians, Dr. Stephan Züchner, Dr. Conrad “Chris” Weihl, and the Interim Chief Research Officer of the Muscular Dystrophy Association, Dr. Angela Lek. Leaders in the field of genetic mapping, all three have devoted their time and expertise to research and treatments for neuromuscular diseases. Their goal is to map the genome for neuromuscular diseases, develop successful treatments, and ultimately find a cure for those effected by neuromuscular diseases. These specialists join us to share their experiences, expertise, and advice.

    Transcript

    Guests:

    Dr. Stephan Züchner, M.D., Ph.D., is a Professor of Human Genetics and Neurology in the role of Chief Genomics Officer at the University of Miami Miller School of Medicine. He received his degrees from the University RWTH Aachen, Germany, and an honorary doctoral degree from the Semmelweis Medical School in Budapest. His research interests are focused on identifying strong genetic variation associated with disease. His lab has been involved in identifying over 100 neuromuscular disease genes, such as the MFN2, SARM1, and SORD. More recently he has made significant contributions to repeat expansion disorders, helping to discover RFC1, FGF14, ABCD3 and other loci. His lab also works on basic mechanisms and the genome biology of short tandem repeat loci. To further enhance the ability to identify pathogenic variation, his team has recently developed machine learning and AI tools that have successfully supported disease gene identification. All this is directed towards the genomics-to-therapy concept, whereby progress in genomics will directly, and at times rapidly, lead to therapeutic options to be tested in clinical trials. He also leads the GENESIS genome database and has leadership and advisory roles ClinGen, UDN/UDN-Foundation, CMT Association, All of Us Research Project, and Muscular Dystrophy Association.

    Connect with Dr. Züchner:

    • X: https://x.com/szuchner
    • Website: https://www.tgp-foundation.org/
    Dr. Conrad “Chris” Weihl is a Professor of Neurology, Head of the Neuromuscular Section and Director of the Muscular Dystrophy Association Clinic at Washington University School of Medicine in St. Louis, Missouri, USA. His research program focuses on both genetic and acquired myopathies with an emphasis on how dysfunction in protein quality controls lead to muscle degeneration. He began his career investigating the pathogenic mechanism of VCP disease mutations in muscle disease. Dr. Weihl has a strong commitment to the training of future neuromuscular clinicians and myologists and was awarded a K24 mid-career investigator award to mentor residents, fellows, junior faculty and early-stage scientists in patient oriented research. Clinically, Dr. Weihl sees patients in a multidisciplinary Muscular Dystrophy Association Care Center and recently established a center devoted to the care of patients with IBM.

    Dr. Angela Lek is the Interim Chief Research Officer at the Muscular Dystrophy Association. Dr. Lek is a renowned scientist with over 15 years of experience in neuromuscular disease research. She now leads MDA’s global research portfolio and strategic direction — driving efforts to accelerate the development of treatments and cures for individuals living with neuromuscular diseases. She has trained and led research programs at institutions including Boston Children’s Hospital and Yale University and brings both deep scientific expertise and a personal commitment to advancing care and therapies for the neuromuscular community.

    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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    1 h et 6 min