On this episode of Advances in Care , host Erin Welsh and Dr. Craig Smith, Chair of the Department of Surgery and Surgeon-in-Chief at NewYork-Presbyterian and Columbia discuss the highlights of Dr. Smith’s 40+ year career as a cardiac surgeon and how the culture of Columbia has been a catalyst for innovation in cardiac care. Dr. Smith describes the excitement of helping to pioneer the institution’s heart transplant program in the 1980s, when it was just one of only three hospitals in the country practicing heart transplantation. Dr. Smith also explains how a unique collaboration with Columbia’s cardiology team led to the first of several groundbreaking trials, called PARTNER (Placement of AoRTic TraNscatheteR Valve), which paved the way for a monumental treatment for aortic stenosis — the most common heart valve disease that is lethal if left untreated. During the trial, Dr. Smith worked closely with Dr. Martin B. Leon, Professor of Medicine at Columbia University Irving Medical Center and Chief Innovation Officer and the Director of the Cardiovascular Data Science Center for the Division of Cardiology. Their findings elevated TAVR, or transcatheter aortic valve replacement, to eventually become the gold-standard for aortic stenosis patients at all levels of illness severity and surgical risk. Today, an experienced team of specialists at Columbia treat TAVR patients with a combination of advancements including advanced replacement valve materials, three-dimensional and ECG imaging, and a personalized approach to cardiac care. Finally, Dr. Smith shares his thoughts on new frontiers of cardiac surgery, like the challenge of repairing the mitral and tricuspid valves, and the promising application of robotic surgery for complex, high-risk operations. He reflects on life after he retires from operating, and shares his observations of how NewYork-Presbyterian and Columbia have evolved in the decades since he began his residency. For more information visit nyp.org/Advances…
In this Quest Podcast episode, we chat with certified Life Coach who lives with Spinal Muscular Atrophy. Amber Bosselman has devoted her career to providing living skills for individuals with physical disabilities, and helping them find personal fulfillment, and develop strategies to improve their lives and reach their goals. While offering her clients a new perspective and a soft place to land, she joins us to share her experiences, expertise and advice when it comes to navigating life and following your dreams. Guests: Amber Bosselman is a certified Life Coach and specializes in coaching people with disabilities. She brings a strong clinical background with a degree in Psychology and blends that perfectly with her practical and everyday tools she offers in life coaching. With over a decade of experience studying mental health and the human mind, Amber is committed to helping people with physical disabilities overcome obstacles and increase their independence. When not busy helping other people live their best life, Amber loves to read, paint and relax with her husband. She soaks up sunshine wherever possible and aims to spread just as much emotional sunshine to others. Connect with Amber:
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:
In this Quest Podcast episode, we chat with certified Life Coach who lives with Spinal Muscular Atrophy. Amber Bosselman has devoted her career to providing living skills for individuals with physical disabilities, and helping them find personal fulfillment, and develop strategies to improve their lives and reach their goals. While offering her clients a new perspective and a soft place to land, she joins us to share her experiences, expertise and advice when it comes to navigating life and following your dreams. Guests: Amber Bosselman is a certified Life Coach and specializes in coaching people with disabilities. She brings a strong clinical background with a degree in Psychology and blends that perfectly with her practical and everyday tools she offers in life coaching. With over a decade of experience studying mental health and the human mind, Amber is committed to helping people with physical disabilities overcome obstacles and increase their independence. When not busy helping other people live their best life, Amber loves to read, paint and relax with her husband. She soaks up sunshine wherever possible and aims to spread just as much emotional sunshine to others. Connect with Amber:
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:
In this episode of Quest Podcast, we chat with three of our MDA Ambassadors. Nora is a passionate animal advocate and lives with Selenon (SEPN1)-related myopathy (RM). Justin is a disability advocate and an Operations Manager and lives with Limb-girdle Muscular Dystrophy and K.L. is an entrepreneur, poker professional, and influencer living with Spinal Muscular Atrophy. They have each devoted themselves to finding their path in life and advocating and teaching others about their respective neuromuscular disease. While offering unique perspectives on dating and marriage, they join us to share their experiences, expertise and advice when it comes to navigating romance and finding love. Transcript Guests: Nora Ramirez lives in California and was diagnosed with Selenon (SEPN1)-related myopathy (RM) at the age of 9 years old. She is one of four siblings with SEPN1-RM; the other three siblings have passed away, which is one of the reasons why advocacy is such an important topic for her. Nora is a dog mom of two, one of which was a foster, and the other found through a rescue organization. She is also a wife, daughter, and aunt. During her free time, she loves to volunteer for nonprofit organizations, and also help friends, family, and strangers with anything they allow. Helping and creating connections with others is what keeps her grounded, motivated, and provides energy for the days ahead. When she is not volunteering, she enjoys playing video games, drawing, painting, writing, reading, or researching. Connect with Nora: Instagram: thatchickwithmd LinkedIn: https://www.linkedin.com/in/nora-r-946219302 Justin Lopez is a 30-year-old disability advocate and the Operations Manager at CASE FMS. Originally from Farmington Hills, Michigan, he now resides in Toledo, Ohio. Diagnosed with Limb-girdle Muscular Dystrophy (LGMD 2B) at 13, Justin has dedicated much of his life to advocating for disability rights and promoting inclusivity in both personal and professional spaces. As a son, brother, husband, and father, Justin understands the importance of community and support. With over six years of experience in operations management, he leads his team with a focus on efficiency and collaboration. In addition to his professional work, Justin is an active speaker and recently served as the keynote speaker for an IT company’s Global Accessibility Awareness Day (GAAD), where he highlighted the importance of accessibility and flexibility in fostering inclusive work environments. Outside of work, he enjoys sports—especially basketball and football—and values quality time with his family. Connect with Justin: Tik Tok: @justinjaylopez24 Facebook: Justin Jay Lopez X/Twitter: @justinjaylo24 K.L. Cleeton is an entrepreneur, poker professional, and influencer committed to empowering individuals to realize their potential. He focuses on startup development and motivates others to overcome their limitations, achieving more than they imagined. He is currently an advisor to Vendoor, an app that enhances efficiency and streamlines operations in the construction and retail sectors. Connect with K.L.: Website: klcleeton.com Instagram: https://www.instagram.com/realhighhands89/ Bluesky: https://bsky.app/profile/highhands89.bsky.social Twitter/X: https://x.com/highhands89 Host: Mindy Henderson is MDA’s Vice President of Disability Outreach & Empowerment, Editor-in-Chief of Quest Media, and the host of this podcast. She was diagnosed with Spinal Muscular Atrophy, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and a writer, and author of the book, The Truth About Things That Suck . Connect with Mindy: LinkedIn: https://www.linkedin.com/in/hendersonmindy/ Instagram: https://www.instagram.com/mindyhendersonspeaks/…
In this Quest Podcast episode, we chat with certified Life Coach who lives with Spinal Muscular Atrophy. Amber Bosselman has devoted her career to providing living skills for individuals with physical disabilities, and helping them find personal fulfillment, and develop strategies to improve their lives and reach their goals. While offering her clients a new perspective and a soft place to land, she joins us to share her experiences, expertise and advice when it comes to navigating life and following your dreams. Guests: Amber Bosselman is a certified Life Coach and specializes in coaching people with disabilities. She brings a strong clinical background with a degree in Psychology and blends that perfectly with her practical and everyday tools she offers in life coaching. With over a decade of experience studying mental health and the human mind, Amber is committed to helping people with physical disabilities overcome obstacles and increase their independence. When not busy helping other people live their best life, Amber loves to read, paint and relax with her husband. She soaks up sunshine wherever possible and aims to spread just as much emotional sunshine to others. Connect with Amber: Facebook: https://www.facebook.com/p/Amber-Bosselman-Coaching-100076004193828/ Instagram: https://www.instagram.com/amber.bosselman.coaching/ Host: Mindy Henderson is MDA’s Vice President of Disability Outreach & Empowerment & Editor-in-Chief of Quest Media, and the host of this podcast. She was diagnosed with Spinal Muscular Atrophy, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and a writer, and author of the book, The Truth About Things That Suck . Connect with Mindy: LinkedIn: https://www.linkedin.com/in/hendersonmindy/ Instagram: https://www.instagram.com/mindyhendersonspeaks/…
In this Quest Podcast episode, we chat with Muscular Dystrophy Association’s National Ambassadors, Leah Z., and Ira Walker. Leah is a dedicated advocate that feels it is important to advocate for yourself and stand up for those that are not able.Ira feels that connecting and sharing his story with others through MDA has been life changing. These Ambassadors join us to share their experiences, expertise, and advice. Transcription Guests: Leah is 17 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 Ira is a 39-year-old who 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. A highly independent and active gentlemen that is living his dream and best life in south Florida while working an exciting career in HR and loves exploring the 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, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and a writer, and author of the book, The Truth About Things That Suck . Connect with Mindy: LinkedIn: https://www.linkedin.com/in/hendersonmindy/ Instagram: https://www.instagram.com/mindyhendersonspeaks/…
In this Quest Podcast episode, we chat with the Kira Cosmetics founder and entrepreneur, who lives with muscular dystrophy. Shakiira Rahaman, who founded her make-up line in 2019 after a life changing event, joins us to share her experiences, expertise, and advice when it comes to navigating life and following your dreams. Transcript Guests: Kira Cosmetics was founded by Shakiira Rahaman , a 37-year-old Fl. woman with Muscular Dystrophy. After an extended hospital stay in 2019, she went home and was inspired by a YouTube entrepreneur video. As a former make-up sales rep, she set out to create her first make-up line! Perfect for make-up lovers who love the art of makeup, Kira Cosmetics is cruelty-free, recyclable, and has packaging that becomes decor. Connect with Shakiira: Website: https://kiracosmetics.com/ Instagram: https://www.instagram.com/p/C2h08KJs8Kx/ Host: Mindy Henderson is MDA’s Vice President of Disability Outreach & Empowerment & Editor-in-Chief of Quest Media, and the host of this podcast. She was diagnosed with Spinal Muscular Atrophy, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and a writer, and author of the book, The Truth About Things That Suck . Connect with Mindy: LinkedIn: https://www.linkedin.com/in/hendersonmindy/ Instagram: https://www.instagram.com/mindyhendersonspeaks/…
In this Quest Podcast episode, we chat with world-renowned advocate, entrepreneur, public speaker and educator, Keely Cat-Wells. She devotes her time and expertise to creating education and employment opportunities and inclusive spaces for those with disabilities - and delivers advice and inspires action while sharing stories of resilience and positivity. Keely is the founder and CEO of Making Space , a talent acquisition and learning experience platform and a co-founder of Making Space Media , a production company that focuses on increasing representation in TV and film. She joins us to share her experiences, expertise, and advice. Transcript Guests: Keely Cat-Wells is an entrepreneur and Disability Rights Advocate dedicated to driving social, systemic, and economic change. After experiencing a multitude of health issues that resulted in a physical disability, Keely focused her career on advocacy and inclusion in entertainment. She founded a talent representation company that is reshaping the perceptions of disability and has placed thousands of actors with disabilities in on-screen projects. She established Making Space, a talent acquisition and learning experience platform that creates pathways to employment and career advancement for those living with disabilities. Keely partnered with TV host, author, and Disability Rights Advocate, Sophie Morgan, to co-found Making Space Media, which produces film, TV, and promotional content that centers on the disabled voice and recently secured a first-look deal with Reese Witherspoon’s Hello Sunshine company. Keely is a public speaker and staunch advocate for disability rights and mental health awareness. She is a founding member of the #WeThe15 campaign, which is considered the most significant human rights movement in sports history. Keely has presented to national leaders, including President Joe Biden, delivered speeches to the UN and large companies and organizations, and has received numerous awards and honors, including Forbes 30 Under 30 and Great British Entrepreneur of the Year. Connect with Keely: https://keelycatwells.com/ https://making-space.com/ https://www.making-space-media.com/ https://www.instagram.com/keely_cat_wells/ https://www.linkedin.com/in/keelycatwells/ https://x.com/keelycatwells https://www.facebook.com/keely.wells3/ Host: Mindy Henderson is MDA’s Vice President of Disability Outreach & Empowerment & Editor-in-Chief of Quest Media, and the host of this podcast. She was diagnosed with Spinal Muscular Atrophy, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and a writer, and author of the book, The Truth About Things That Suck . Connect with Mindy: LinkedIn: https://www.linkedin.com/in/hendersonmindy/ Instagram: https://www.instagram.com/mindyhendersonspeaks/…
In this Quest Podcast episode, we chat with Shaun Hill, MDA’s Manager of Public Policy & Advocacy and Mark Fisher, MDA’s Director of Advocacy Engagement. They join us to share the most recent voting updates, accessibility information, and expertise and advise about MDA's voting program and advocacy efforts. Please join us and make your vote count at https://mda.org/vote . Guests: Shaun Hill currently serves as Manager, Public Policy & Advocacy for the Muscular Dystrophy Association. Ms. Hill is a veteran government relations professional, who has worked continuously in the healthcare arena, championing causes on behalf of both patients and providers, working through legislative, regulatory, and advocacy channels to impact change. In many of these roles she has led the charge on advocacy campaigns, such as MDA’s current initiative Access the Vote. A native of Washington, DC, she is a graduate of Howard University and has studied political management at George Washington University. Mark Fisher is the Director of Advocacy Engagement at the Muscular Dystrophy Association. In this role, Mark leads MDA’s grassroots program and advocacy volunteer efforts. He works to empower advocates and connect them with key decisionmakers in order to advance public policies that improve the lives of the neuromuscular disease community. He previously served as the Digital Grassroots Manager at the American Heart Association and was also a field organizer on a U.S. Senate campaign. Mark earned his Master of Public Policy from American University and is originally from Pittsburgh, PA. For Information About Voting - https://mda.org/vote For Local information about Voting- https://www.vote.org/ Join the Grassroots Advocacy Team - https://www.votervoice.net/MDA/register Connect with MDA Advocacy: advocacy@mdausa.org Host: Mindy Henderson is MDA’s Vice President of Disability Outreach & Empowerment, Editor-in-Chief of Quest Media, and the host of this podcast. She was diagnosed with Spinal Muscular Atrophy, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and author of the book, The Truth About Things That Suck . Connect with Mindy: LinkedIn: https://www.linkedin.com/in/hendersonmindy/ Instagram: https://www.instagram.com/mindyhendersonspeaks/…
In this Quest Podcast episode, we chat with the director, executive producer, and leading character of the movie Good Bad Things : Shane Stanger, Steve Way, and Danny Kurtzman respectively. This trio joins us to share their experiences, expertise, advise and hope when it comes to navigating life and Hollywood, and creating a future that is inclusive of everyone. Keep up on the latest information about the movie release at www.goodbadthings.com . Transcript Guests: A Southern California native, Shane Stanger is a filmmaker and entrepreneur whose career began in 2009 in the ICM mailroom before spending two years as an assistant to an agent in the motion picture department. Shane went on to associate produce BERNIE, directed by Richard Linklater, starring Jack Black and Matthew McConaughey. The success of BERNIE paved the way for Shane's role as the lead producer for the independent feature Pretty Perfect . In May 2013, Shane founded and launched The Baked Bear, a dessert concept out of San Diego specializing in ice cream sandwiches. In 2016 Shane was a recipient of the Forbes 30 Under 30 Award. By 2021, Shane had opened over 35 Baked Bear locations across 12 states and decided to return to his true passion: filmmaking. Shane enrolled in the prestigious Peter Stark Producing Program at USC’s School of Cinematic Arts and received his MFA in May 2023. Good Bad Things is Stanger’s writing and directing debut and during the world premiere at Slamdance Film Festival (2024) won the audience and grand jury awards. Connect with Shane: Instagram: @shanestanger Instagram: @goodbadthingsfilm Steve Way is a 33-year-old actor, comedian, writer, and speaker. He was born with Muscular Dystrophy and is an activist for disability rights and universal healthcare. Steve can be seen in the Hulu show RAMY and is the executive producer of the award-winning film Good Bad Things . Connect with Steve: Instagram: @thesteveway www.thesteveway.com https://thesteveway.substack.com/ Danny Kurtzman is a physically disabled model, actor, entrepreneur, and advocate for the disabled community. Diagnosed with a muscular dystrophy at a young age, Danny never let his disability stop him from doing anything he put his mind to. After graduating from LMU, he joined the family business becoming the 4th generation in the fashion industry. His passion and love for fashion drove him to creative direct, design, market, and grow multiple brands. Today Danny's passion not only lies in fashion, but in making this world a more accessible place for all disabled individuals. Danny uses his platform to spread his disability pride and tell the world that despite being physically disabled that he says “there’s nothing wrong with my body. It is perfect.” Connect with Danny: Instagram: @dannykurtzman Host: Mindy Henderson is MDA’s Vice President of Disability Outreach & Empowerment, Editor-in-Chief of Quest Media, and the host of this podcast. She was diagnosed with Spinal Muscular Atrophy, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and author of the book, The Truth About Things That Suck . Connect with Mindy: LinkedIn: https://www.linkedin.com/in/hendersonmindy/ Instagram: https://www.instagram.com/mindyhendersonspeaks/…
In this Quest Podcast episode, we chat with the Executive Director of Open Style Lab (OSL), a non-profit organization that is on a mission to make style accessible for everyone, regardless of cognitive and physical abilities. Yasmin Keats has devoted her career to the core functions of research, education, and informing the public about inclusive design. She stresses style empowers people, bringing them joy, identity, and self-expression, and inclusion is at the heart of her work. She joins us to share her experiences, expertise, and advice. Transcript Guests: Yasmin Keats is the Executive Director at Open Style Lab (OSL), A national design award-winning nonprofit organization initiated at MIT in 2014. OSL is dedicated to making style accessible to people of all abilities. Yasmin comes to this field with her experience of living with a physical disability. She has a background in graphic design, architecture, and creative learning. Connect with https://www.openstylelab.org/ https://www.instagram.com/openstylelab https://www.facebook.com/openstylelab/ https://www.linkedin.com/company/open-style-lab/ Host: Mindy Henderson is MDA’s Vice President of Disability Outreach & Empowerment, Editor-in-Chief of Quest Media, and the host of this podcast. She was diagnosed with Spinal Muscular Atrophy, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and a writer, and author of the book, The Truth About Things That Suck . Connect with Mindy: LinkedIn: https://www.linkedin.com/in/hendersonmindy/ Instagram: https://www.instagram.com/mindyhendersonspeaks…
In this Quest Podcast episode, we chat with a retired US Army veteran and firefighter, Ken Sutcliffe and his wife, Andi. He has devoted his career to saving lives but now he must also fight for his own after being diagnosed with Amyotrophic lateral sclerosis, or ALS, also known as Lou Gehrig's Disease, He and his wife join us to share their experiences, advice and stories of resilience and positivity. To view a full list of clinical trials, you may be eligible for, go to https://www.mda.org/research/clinical-trials Transcript Guests: Ken Sutcliffe is a retired US Army veteran and a Dallas, Texas firefighter. He joined the military at age 17 and the Dallas Fire Department in 1987. He met his wife, Andi, of 13 years while helping her move and eventually they worked together on the Texas Task Force One statewide urban search and rescue team. He retired in June 2020 after 33 years of service. He began to show symptoms of ALS during the summer of 2020 and was diagnosed in November 2021. Connect with Ken and Andi: https://www.facebook.com/dallas.firefightersassoc Host: Mindy Henderson is MDA’s Vice President of Disability Outreach & Empowerment & Editor-in-Chief of Quest Media, and the host of this podcast. She was diagnosed with Spinal Muscular Atrophy, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and a writer, and author of the book, The Truth About Things That Suck . Connect with Mindy: LinkedIn: https://www.linkedin.com/in/hendersonmindy/ Instagram: https://www.instagram.com/mindyhendersonspeaks/…
In this Quest Podcast episode, we chat with world-renowned advocate, entrepreneur, TV personality and producer, Sophie Morgan. She devotes her time and expertise to create inclusive spaces for those with disabilities and deliver advice, inspire action, and make us feel closer together while sharing stories of resilience and positivity. Sophie is a co-founder of Making Space Media , a production company that focuses on increasing representation in TV and film, and a leader in the global disability rights campaign “ Rights on Flights ”. She joins us to share her experiences, expertise, and advice. Transcript Guests: Sophie Morgan is a 38-year-old BAFTA nominated TV presenter, producer, writer, disability rights advocate, and artist. Paralyzed in an automobile accident when she was 18 years old, Sophie became one of the first female wheelchair users globally to host on television and is transforming the representation of disability on screen. Sophie can be seen anchoring live sports, including the Paralympics, fronting in her own prime-time travel series and hard-hitting current affairs documentaries, and as a regular panelist for ITV’s Loose Women. She recently co-founded Making Space Media with Keely Cat Wells. Making Space Media, a production company that focuses on increasing representation in TV and film, recently contracted with Reese Witherspoon’s media company Hello Sunshine. Named one of the top 10 influential disabled people in the UK, her advocacy work includes serving on the advisory boards for Human Rights Watch, speaking at the United Nations, spearheading the global disability rights campaign “Rights on Flights”, serving as a Can-Am global ambassador, writing a monthly column for Conde Nast Traveler, and much more. Connect with Sophie: https://making-space.com/ https://rightsonflights.com/ https://www.instagram.com/sophlmorg/ https://www.sophiemorgan.com/ https://twitter.com/sophiemorgan96 https://www.facebook.com/SophMorg/ https://www.linkedin.com/in/sophie-morgan-b05a0671/ Host: Mindy Henderson is MDA’s Vice President of Disability Outreach & Empowerment & Editor-in-Chief of Quest Media, and the host of this podcast. She was diagnosed with Spinal Muscular Atrophy, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and a writer, and author of the book, The Truth About Things That Suck . Connect with Mindy: LinkedIn: https://www.linkedin.com/in/hendersonmindy/ Instagram: https://www.instagram.com/mindyhendersonspeaks/…
In this Quest Podcast episode, we chat with geneticist, Dr. Jeffrey Chamberlain and the Chief Research Officer of the Muscular Dystrophy Association, Dr. Sharon Hesterlee. Both have devoted their time and expertise to create and move forward research and treatments for neuromuscular diseases. Their goal is to create successful treatments and eventually a cure for those effect by neuromuscular diseases. These specialists join us to share their experiences, expertise, and advice. Transcript Guests: Dr. Jeffrey Chamberlain is a geneticist with expertise in the muscular dystrophies, and is currently a professor of neurology, medicine and biochemistry at the University of Washington School of Medicine, director of the Wellstone Muscular Dystrophy Specialized Research Center, and the McCaw Endowed Chair in Muscular Dystrophy. He is also current president of the American Society for Gene and Cell Therapy. Research in the Chamberlain lab focuses on understanding the molecular basis of, and developing treatments for, the muscular dystrophies with a focus on gene therapy. His group invented ‘micro-dystrophin’ and discovered that vectors derived from AAV can be used for bodywide, systemic gene delivery to muscle. Several of his vector designs are being tested in human clinical trials for Duchenne muscular dystrophy. Connect with Dr. Chamberlain: https://sites.uw.edu/chamblab/home/ https://www.seattlemuscle.org Dr. Hesterlee is Chief Research Officer of the Muscular Dystrophy Association. She has over 20 years of experience in neuromuscular research in both the nonprofit and industry space, where she has served variously as head of research, project lead and CEO. She has been involved in numerous efforts to remove barriers to therapy development for rare disease and foster interactions between patient advocacy groups and industry. She received her Ph.D. in neuroscience from the University of Arizona in 1999. Connect with Dr. Hesterlee: https://www.linkedin.com/in/sharon-hesterlee/ Host: Mindy Henderson is MDA’s Vice President of Disability Outreach & Empowerment & Editor-in-Chief of Quest Media, and the host of this podcast. She was diagnosed with Spinal Muscular Atrophy, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and a writer, and author of the book, The Truth About Things That Suck . Connect with Mindy: LinkedIn: https://www.linkedin.com/in/hendersonmindy/ Instagram: https://www.instagram.com/mindyhendersonspeaks/…
In this Quest Podcast episode, we chat with the founders of Dateability, a dating app geared towards individuals with disabilities and chronic illnesses. Alexa and Jacqueline Child have devoted their time to create a safe and accepting space that allows individuals to create meaningful connections. Their goal is to make love accessible for everyone. These ladies join us to share their experiences, expertise, and advice. Transcript Guests: Alexa Child , co-founder of Dateability, graduated from Georgetown Law in 2015 and currently works as a public interest attorney. Through witnessing her sister’s experience with disability, Alexa has become an advocate and ally for the disability community. She is passionate about social justice, enjoys TV and film, and loves all things Halloween. Jacqueline Child , co-founder of Dateability, has turned her experience with disability and chronic illness into a new venture. She created Dateability with her sister after years of discouraging ableist experiences on the mainstream dating apps. When she isn’t managing her health, Jacqueline enjoys playing the guitar, reading, and spending time with her family and dogs. Connect with Dateability: Instagram: https://www.instagram.com/dateabilityapp/ TikTok: https://www.tiktok.com/@dateability Facebook: https://www.facebook.com/dateabilityapp Info Page: https://info.dateabilityapp.com/ iOS: https://apps.apple.com/us/app/dateability/id6443474660 Android: https://play.google.com/store/apps/details?id=com.dateabilityapp&hl=en&gl=US Web App: https://www.dateabilityapp.com/login Host: Mindy Henderson is MDA’s Vice President of Disability Outreach & Empowerment, Editor-in-Chief of Quest Media, and the host of this podcast. She was diagnosed with Spinal Muscular Atrophy, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and a writer, and author of the book, The Truth About Things That Suck . Connect with Mindy: LinkedIn: https://www.linkedin.com/in/hendersonmindy/ Instagram: https://www.instagram.com/mindyhendersonspeaks/…
In this Quest Podcast episode, we chat with one of Muscular Dystrophy Association’s Ambassadors, Isaac Banks about finding fulfillment in our lives as we skyrocket into 2024. As a certified public speaker, author, and podcaster, he has devoted his career to providing equity and inclusion for others and finds personal fulfillment through his faith and mindfulness. He joins us to share his experiences, expertise, and advice. Transcript Guests: Isaac Banks has many obstacles that could stop him, but muscular dystrophy isn’t one of them. At age 8, Isaac was misdiagnosed as having Duchenne muscular dystrophy by a family doctor. When he was 21, doctors noticed Isaac’s diagnosis wasn’t progressing as expected. After contacting MDA, he was tested and the results revealed that he was actually living with limb girdle muscular dystrophy. Isaac has since found a successful career in corporate America. He is a talented public speaker and has designed a comprehensive Diversity, Equity, and Inclusion program, as well as a Servant Leadership for Management program. Over the years, Isaac participated in various programs provided by MDA, including Summer Camp and speaks about the profound ways that Summer camp set him up for success in life and molded him into the deeply fulfilled person he is today, spending as much time as he can giving back. Connect with Isaac: Facebook: IsaacDBanks LinkedIn: isaac-d-banks Apple Podcast: Man vs Wheelchair PodBean: Man vs Wheelchair Host: Mindy Henderson is the Senior Director & Editor-in-Chief of Quest Media, and the host of this podcast. She was diagnosed with Spinal Muscular Atrophy, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and a writer, and author of the book, The Truth About Things That Suck . Connect with Mindy: LinkedIn: hendersonmindy Instagram: mindyhendersonspeaks…
In this Quest Podcast episode, we chat with Muscular Dystrophy Association’s National Ambassadors, Leah Z., and Amy Shinneman. Amy feels that connecting and sharing her story with others through MDA has been life changing. Leah is a dedicated advocate that feels it is important to advocate for yourself and stand up for those that are not able. These ladies join us to share their experiences, expertise, and advice. Transcript Guests: Amy lives with a type of muscular dystrophy called Bethlem myopathy. She has had symptoms since birth but did not receive a diagnosis until she was 44 years old - thanks to genetic testing. She is the mom of two boys who are in college and high school. She enjoys painting with acrylics and oils, cooking, baking, reading and exercising. She also enjoys training for marathons with her husband, Jamie, who pushes her in her duo bike. They have competed in multiple marathons together. Connect with Amy: Facebook: amy.l.shinneman Instagram: @ashinneman Leah is 16 years old and was born with an ultra-rare form of neuromuscular disease. She is an accomplished actress, dancer, model and adaptive athlete. She has danced on the Lincoln Center stage, walked in New York Fashion Week... twice , and appeared in the Jennifer Lopez movie, Marry Me . Connect with Leah: Instagram: @leahj.zelaya Host: Mindy Henderson is the Senior Director & Editor-in-Chief of Quest Media, and the host of this podcast. She was diagnosed with Spinal Muscular Atrophy, type 2 when she was 15 months old and has been a life-long partner to MDA. Mindy is also a motivational speaker and a writer, and author of the book, The Truth About Things That Suck . Connect with Mindy: LinkedIn: https://www.linkedin.com/in/hendersonmindy/ Instagram: https://www.instagram.com/mindyhendersonspeaks/…
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