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 d…

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 experie…

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 …

In this episode, Mark S. Sulkowski, MD, FIDSA, FAASLD; Tatyana Kushner, MD, MSCE; Paul Y. Kwo, MD; and patient advocate Jacki Chen, PhD, consider barriers and solutions for more expansive HBV treatment in the United States. Topics include: Patient subgroups to consider for treatment outside guideline criteria Adverse event and cost-effectiveness co…

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 eventu…

In this episode, Arun B. Jesudian, MD, and Mazen Noureddin, MD, MHSc, discuss the expert-informed clinical pathway for the multidisciplinary care of patients with MASLD or MASH, current and emerging therapeutics, and management optimization strategies. Presenters: Arun B. Jesudian, MD Associate Professor of Clinical Medicine Division of Gastroenter…

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…

In this episode, Jennifer Green, MD, and Carol Hatch Wysham, MD, break down the latest headlines on incretin-based therapies and how to address these topics with patients. Their discussion includes: Beneficial effects beyond glycemic control Adverse events and how to manage them Non- or partial responders and the importance of setting expectations …

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 a…

In this episode, Douglas Dieterich, MD, leads a panel discussion with Camilla S. Graham, MD, MPH, and Robert Wong, MD, MS, to consider advantages and barriers to universal screening for chronic HBV infection and universal HDV screening in adults with HBV in the United States. Topics include: Updated CDC recommendations for one-time universal screen…

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. Thes…

In this Quest Podcast episode, we chat with the Director of Marketing and Communications at Idealist.org, President for New York Women in Communications (NYWICI) and host of the NYWICI WomenHeard Changemakers podcast. Georgia Galanoudis had devoted her career to deliver advice, inspire action, and make us feel closer together while sharing stories …

In this Quest Podcast episode, we chat with a distinguished business leader from the St. Louis area, who lives with physical disabilities. Lori Becker, CEO of Starkloff Disability Institute, has devoted her career to promoting diversity and inclusion both in the workplace and in the community. She joins us to share her experiences, expertise, and a…

In this podcast episode, Anita Afzali, MD, MPH, MHCM, FACG, AGAF, and Aja McCutchen, MD, discuss how women in gastroenterology (GI) can embrace and enhance their value. These inspiring GI medicine experts propose a practical formula that involves ongoing, careful self-reflection and asking yourself how your strengths, core values, and interests can…

In this podcast episode, Aline Charabaty, MD, AGAF, FACG, and Marla Dubinsky, MD, discuss how women in gastroenterology (GI) can find their “friendtors” and build a strong network of mentors, sponsors, and allies. Although there may be many barriers for women in the GI medicine specialty, these experienced leaders have useful tips to help emerging …

In this podcast episode, Aline Charabaty, MD, AGAF, FACG, and Christina Tennyson, MD, DipABLM, discuss how women in gastroenterology (GI) can fight burnout and establish a work–life balance that meets their needs. Tune in to learn how to say no, about the importance of saying yes to meaningful things that will advance your career and bring you joy,…

In this Quest Podcast episode, we chat with a renowned journalist, model and disability rights activist, who lives with physical disabilities. Madison Lawson, who has been featured in publications including Vogue, Glamour, Teen Vogue, Allure and brands like Sephora, PrettyLittle Thing, and Olay, joins us to share her experiences, expertise, and adv…

In this Quest Podcast episode, we chat with Mark Fisher, MDA’s Director of Advocacy Engagement and Michael Lewis, MDA’s Director of Disability Policy, an advocate who lives with physical disabilities. They join us to share the most recent air travel updates, advocacy information, and expertise and advise about MDA's grassroots program and advocacy …

In this Quest Podcast episode, we chat with Brooke Eby, who was diagnosed with ALS in March 2022. Brooke Eby was recently featured on the Today Show, and with almost 70,000 followers on Instagram alone hopes to spread awareness of ALS to as many people as possible. Transcript Guests: Brooke is a social media influencer who was recently featured on …

In this Quest Podcast episode, we chat with a renowned comedian, writer, and advocate who lives with physical disabilities. Steve Way, actor of the Hulu Original “Ramy”, joins us to share his experiences, expertise, and advise when it comes to navigating life and Hollywood. Transcript Guests: Steve is a 32-year-old actor, comedian, writer, and spea…

Summer is around the corner! In this Quest Podcast episode, we chat with two renowned travel writers who live with physical disabilities. Sylvia Longmire, creator of the Spin the Globe accessible travel blog, and Cory Lee, creator of the Curb Free with Cory Lee travel blog, join us to share their experiences, expertise, and advice when it comes to …

Megan DeJarnett is an author, speaker, disability DEI educator, and inclusion advocate. Megan lives with SMA and is the organizational founder of No Such Thing, a company with a mission to help others redefine purpose by removing defining labels. Author of the children's books, "No Such Thing as Normal" and "Lovely as Can Be", Megan teaches childre…

As new treatments, cutting edge research, and a better understanding of genetic sequencing and mutations bring innovative change to the treatment landscape for neuromusclar disease, understanding your options and accessing care is more important than ever. We sit down with Dr. Matthew Harms, a neuromuscular neurologist and neruogenetics expert, to …

For our February Valentine's Day Quest Podcast, we catch up with Bill Crossland, a writer, director, producer, and actor who lives with muscular dystrophy. Bill shares his insights and experiences with our live audience as we chat about dating with a disability, love, relationships, and his feature-length-film "Catching Up". His movie is available …

We are excited to start a new year talking about new mindsets, especially when it comes to adversity. On our first episode of 2023, Mindy talks mindset with Jose Flores, who lives with spinal muscular atrophy, in front of a live audience. Jose is a professional speaker, "mindset disruptor," and #1 best-selling author of “Don't Let Your Struggle Bec…

On this episode of Quest podcast, we join forces with hosts of the popular podcast "Embrace It," Estela Lugo and Lainie Ishbia. Both women live with Charcot Marie Tooth (CMT) and are active with the Hereditary Neuropathy Foundation, raising awareness and offering support to their community. Estela and Lainie bring their incredible chemistry and per…

This podcast episode is part of a multimedia program discussing the impact of health disparities in anemia of chronic kidney disease (CKD) on patient outcomes. Tune in to hear Santosh Saraf, MD, and Milda Saunders, MD, MPH, highlight mitigation strategies to improve screening and management. The overview will include: The definition of CKD and the …

Barriers in travel and the lack of accessible transportation are huge issues for many people living with nueromuscular disease and other physical disabilities. Today, we chat with Kelly Buckland, a disability policy advisor at the U.S. Department of Transportation (DOT), and Michael Lewis, the director of disability policy at MDA. Both guests play …

Inclusively is a technology centered inclusions solution and employment platform for job seekers with disabilities, mental health conditions, and chronic illnesses. Inclusively’s vision is to create a front door to employment that is open to all people, unlocking the world’s hidden talents in the disability community. In this episode, Sarah Bernard…

MDA Let's Play is a welcoming online gathering place for teens and adults where they play together, forge new friendships, share similar challenges, learn new skills, and sometimes get to hang out with celebrities, sports athletes, and professional creators. More than two million viewers have watched MDA Let's Play online events on Twitch. I chat w…

As the third podcast in our accessibility in the entertainment world, we sit down with Jonathan Lengel. Jonathan is an actor, singer, and performer who lives with a rare form of congenital muscular dystrophy. Jonathan became active in theater as a kindergartener and was recently discovered as part of a worldwide casting call to star in the upcoming…

James Ian is a singer, songwriter, multi-instrumentalist, actor and writer who lives with spinal muscular atrophy (SMA). His song "Spaces" has over 744,000 views on YouTube and highlights the lives of others living with SMA. He worked with Genentech, a three-time Grammy nominated producer, and an executive at Universal Music to create this incredib…

Born with a rare form of neuromuscular disease, Leah Zelaya faced a host of challenges including medical claims that she would possibly never walk. In spite of these obstacles, Leah learned to believe in her abilities. Through strenuous physical therapy and determination, she is now able to ambulate with forearm crutches. Leah has taken that determ…

Today's guest is Lorraine Woodward, an entrepreneur, business owner, and life-long advocate for people with disabilities. She is the creator of multiple businesses, services, and foundations. An avid traveler, she created an accessible vacation home at Carolina Beach, NC, for her family to enjoy and to serve as a short-term rental home for other tr…

In this episode, listen as Karen H. Costenbader, MD, MPH, and Brad H. Rovin, MD, answer key questions about identifying patients at high risk for lupus nephritis, whether an elevated serum creatinine always signals lupus nephritis, the safety of newer therapies for lupus in women who are pregnant or breastfeeding, and the possibility of using SGLT2…

In this episode, David S. Kountz, MD, discusses with Keith C. Ferdinand MD, FACC, FAHA, a patient case in which health disparities affected NVAF care and provides patient, provider, and health-system level strategies to address these disparities to improve NVAF-related cardiovascular outcomes. Presenters Keith C. Ferdinand, MD, FACC, FAHA Professor…

In this episode, Keith C. Ferdinand MD, FACC, FAHA, discusses with David S. Kountz, MD, a patient case in which health disparities affected NVAF care and provides strategies to address low health literacy and patient access to direct-acting oral anticoagulant to improve NVAF-related cardiovascular outcomes. Presenters Keith C. Ferdinand, MD, FACC, …

In this episode, Karen H. Costenbader, MD, MPH, and Brad H. Rovin, MD, discuss health disparities in systemic lupus erythematosus and lupus nephritis. Topics include: Disproportionate prevalence among marginalized groups in the United States Lupus-related social determinants of health Challenges with medication adherence Strategies to reduce these …

This podcast is the third in a series of 3 featuring an expert multidisciplinary panel of faculty addressing the impact of social determinants of health on NVAF and CV-related outcomes and strategies to overcome these disparities. In this episode, Keith C. Ferdinand, MD, FACC, FAHA, details the effects of SDOH on anticoagulation prescribing in NVAF…

This podcast is the first in a series of 3 featuring an multidisciplinary panel of expert faculty addressing the impact of social determinants of health on NVAF and CV-related outcomes and strategies to overcome these disparities. In this episode, David S. Kountz, MD, provides a detailed explanation of the atrial fibrillation paradox and data on th…

This podcast is the second in a series of 3 featuring an expert multidisciplinary panel of faculty addressing the impact of social determinants of health on NVAF and CV-related outcomes and strategies to overcome these disparities. In this episode, Laura Ross PA-C, CLS, dives deeper into the impacts of SODH on NVAF care and provides strategies to a…

Sabrina Johnson lost her dad to ALS in 2019. In this episode, she shares how she turned her pain into purpose and became an ALS advocate. The journey to diagnosis was hard enough, but watching her dad battle a terminal disease forever changed her. After a lightbulb moment, she decided to turn her anger into ambition and became an advocate for patie…

Today we are connecting with the key players of two national ALS Registries to discuss the power that these registries harness to better understanding this disease, trends, and potential treatments. We will be speaking with Dr. Paul Mehta, the Principal Investigator for the United States congressionally-mandated National Amyotrophic Lateral Scleros…

Judith (Judy) Heumann is a lifelong advocate for the rights of disabled people and is often referred to as "the MLK of the disability civil rights movement". She has played a role in the development and implementation of major legislation including the IDEA, Section 504, the Americans with Disability Act and the Convention on the Rights of Persons …

Parenting is one of the toughest jobs on the planet. It is also one of the best, most rewarding, incredible things you can do. In this episode, we invite you to listen to our coffee-talk about three personal journeys through motherhood with a neuromuscular disease. Each of our stories is different, and we hope that each will bring you joy and encou…

Today in the spirit of Valentine's Day, we are talking with two married couples about their dating and eventual marriage. Under most circumstances, dating and marriage can be full of highs and lows, and when you throw a disability into the equation, there can be some unique challenges for the couple to work through. Today we're going to benefit fro…

Having a sibling can be amazing. Siblings can be built-in playmates and best-friends, your partner in crime and a constant in an individual's life. Siblings represent deep-roots and home for the entire life journey they embark on together. But sibling relationships are not without complications. In this episode, we are talking to sibling pairs wher…

Need a last-minute gift-giving idea? You’re in luck because in this episode, we are talking all about fun do-it-yourself crafts and gift-giving, recipes and more. We have two guests joining us who are known for their art, entertaining and baking skills and we are all sharing ideas for how to make do-it-yourself easy AND accessible. Campfire Bars Re…

The holidays can be a fun, festive time of year. There are decorations, music, parties, food...but for many, the holidays can be an incredibly stressful time. And when dealing with an illness or disability, like a neuromuscular disease, while the holidays can still be lots of fun, there are also additional circumstances that can increase our stress…

This month, we continue our series on “Access to the World,” with a look at architecture. In this episode, Mindy speaks with Paul Robertson who lives with Limb Girdle Muscular Dystrophy, type 2J. Paul recently built a new home to suit his changing mobility and joins us to discuss the building process and what he did to make his new home accessible.…