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.

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.

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.

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.

In this Quest Podcast episode, we chat with MDA Ambassadors, Payton Rule, Fred Graves and former MDA National Ambassador Amy Shinneman. Payton shares a journey of transformation from self-doubt to pride, emphasizing how important community has been in helping her feel seen and valued. While Fred offers a perspective rooted in resilience and advocacy, discussing how he’s navigated life with a disability by focusing on his strengths and passions and reflecting on the daily decisions he makes to affirm his self-worth, despite encountering ableism or societal barriers. Amy also speaks about how her understanding of Disability Pride has grown over time, especially as she’s learned to embrace her disability as part of her identity rather than something to hide or overcome. These ambassadors share their experiences, expertise and advice when it comes to a celebration of identity, strength, and the ongoing journey toward empowered self-expression, disability pride and navigating life.

Amy Shinneman is a disabled blogger, a columnist for the Hamilton County Reporter, and freelance writer living with 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 college-aged sons. She enjoys painting with acrylic and oils, cooking, baking, reading, and exercising. She also enjoys training for marathons with her husband, Jamie, who pushes her on her duo bike. They have competed in multiple marathons together.

Fred Graves lives with limb-girdle muscular dystrophy (LGMD) and has a passion for disability advocacy. He loves spending time with his son, and his interests include music production, drones, sneaker collecting, travel, and staying connected to his MD/LGMD “fam.” 

Payton Rule is a Clinical Psychology PhD student at Washington University in St. Louis, where her research focuses on wellbeing among individuals with disabilities. She was diagnosed with Charcot-Marie-Tooth disease (CMT) at the age of five. In her free time, Payton enjoys playing wheelchair pickleball, spending time with friends and family, and exploring local parks with her dog.

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 a former attorney who left her law practice to devote her time to building Service Dogs, Inc. Sheri Soltes founded Service Dogs, Inc. in 1988 on the concept of using dogs rescued from animal shelters. Under her guidance, Service Dogs, Inc. has led the industry in combining the use of all rescue dogs with positive reinforcement training methodology. While offering her clients more independence and a new leash on life, she joins us to share her experiences, expertise and advice when it comes to service dogs and navigating life.

Sheri Soltes founded Service Dogs, Inc. in 1988 on the concept of using dogs rescued from animal shelters. An honors graduate from both the University of Texas School of Law and the University of Texas Plan II Honors undergraduate program, she left her law practice to devote her time to building Service Dogs, Inc. Under her guidance, Service Dogs, Inc. has led the industry in combining the use of all rescue dogs with positive reinforcement training methodology.

​In 2023, Sheri served as the new Chair of Assistance Dogs International North America (ADI NA). She chaired the ADI NA Legislative and Advocacy Committee from 2018 - 2022. Her work contributed to the revisions of the Air Carrier Access Act making air travel safer for passengers traveling with legitimate Service Dogs.

In 2022, she helped negotiate with Walmart and Etsy to stop selling Service Dog vests and other equipment to the general public.

Sheri has mentored assistance dog programs around the world including Australia, Japan, Spain and Chile and has been a featured speaker at many conferences and institutions.

​Sheri’s articles on the legal rights of Assistance Dog users have been published by Assistance Dogs International, the International Association of Assistance Dog Partners and Leader Dogs for the Blind. She drafted the 1995 revisions for Texas’ Assistance Dog accessibility statute.

​In 2023, Austin Business Journal selected Sheri as a finalist in their Women in Business Awards and their CEO Awards. In 2022 she won an Austin American-Statesman Extraordinary Woman Award.

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 a former pharmacist turned singer/songwriter who lives with Generalized Myasthenia Gravis. Dania Quill has devoted her time and expertise to create inclusive spaces for those with disabilities and deliver advice, inspire action, and make us feel closer through song while sharing stories of resilience and positivity. While offering her followers a voice and a new perspective, she joins us to share her experiences, expertise and advice when it comes to navigating life and following your dreams.

Listen to her song “Invisible People” that MG Holistic has chosen for the 5 year Anniversary video and official MG Conference Song: https://daniaquill.com/track/4291421/invisible-people

Daniä Quill fell in love with the guitar when she was just six years old, but coming from a family of medical practitioners she chose pharmacy as her profession. She was enjoying a successful career as a hospital pharmacist, reserving music for weekend hobby time when it all came to a screeching halt. One Halloween evening Quill fell, then fell again and couldn’t keep to her feet. “I didn’t hurt,” she recalls. “I could feel everything normally, I just couldn’t move.”

For the next two years she saw neurologist after neurologist, some who even accused her of lying, before she was finally diagnosed with Myasthenia gravis. MG is an autoimmune neuromuscular disease that results in intermittent periods of weakness or partial paralysis of the body’s voluntary muscles. Quill’s case turned out to be refractory to standard treatment, leaving her vulnerable to exacerbations and crisis - the loss of the use of breathing muscles. And along with her MG came the rather rare complication of dysautonomia that causes episodic loss of her ability to digest food. Ironically, this resulted in the necessity for IV feeding for the IV feeding specialist pharmacist. Through all this, Quill lost her job. But more devastating to her was the weakness in her muscles that made her believe she could no longer play or sing.

But she became determined to share her music with the world. Lacking the stamina to play long sessions she taught herself to record her songs, coaxing her muscles and voice to sustain long enough to lay down one sound bite at a time. A recent video got over 16K views on TikTok, but the proudest moment for Quill was knowing it resulted in the search for “Happy things to cheer you up.”

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.

In this Quest Podcast episode, we chat with Joel Cartner, MDA’s Director of Access Policy, and Jori Houck, MDA’s Manager of Advocacy Engagement. They join us to share the most recent updates and information about Medicaid benefits, current legislative efforts and what MDA’s Advocacy Team is doing to protect those efforts, and how you can get involved. 

Guests: 

Joel Cartner is a lawyer and public policy professional working as the Muscular Dystrophy Association’s Director of Access Policy. Cartner leads MDA’s efforts in conceiving, enacting, and supporting the implementation of public policy proposals that expand access to care for the neuromuscular disease community. Cartner has a background in health, disability, and education law (including complex litigation) and policy. He received his J.D. from Quinnipiac University School of Law and his B.A. in Political Science from the University of North Carolina Wilmington.

Connect with Joel: 

Jori Houck is the Manager of Advocacy Engagement at the Muscular Dystrophy Association. Jori mobilizes advocates, helps craft legislative and advocacy strategies alongside the Public Policy and Advocacy team, and works to elevate the voices of the neuromuscular community. Prior to joining MDA, Jori worked in nonprofit education and career training advocacy, as well as spent time as a Congressional staff member. She enjoys building relationships with advocates, legislators, partner advocacy organizations, and other stakeholders. She is always looking for innovative ways to bridge gaps between lived experience and legislative action that elevates the voices of the neuromuscular and disability communities. She helps lead efforts to educate and engage MDA advocates, empowering them to share their stories and drive meaningful change. She is an alumna of the University of Connecticut. Outside of work, Jori enjoys coffee, nature, watching sports, and traveling, especially planning dog-friendly trips with her Yorkie, Tristan.

Connect with Jori: 

Email: [email protected]

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 writer, and author of the book, The Truth About Things That Suck.

In this Quest Podcast episode, we chat with MDA Ambassador Jess Westman about embracing individuality and finding joy in our lives as paths and priorities change. The activist, actor, author, and podcaster has devoted his career to providing joy and laughter to others and finds personal fulfillment through his faith and conscientiousness. Jess joins us to share his experiences, expertise, and advice.

Jess Westman is a 25-year-old actor, disability activist, writer/composer, comedian, and human person (in that order). Having grown up onstage, Jess took the leap from West Texas to New York City in 2021 to pursue a professional career in the arts. Today, Westman is involved with Second City Improv, the Grammy-winning Brooklyn Tabernacle, and hosts the all-new comedy podcast, "This Podcast Just Might Change Your Life," streaming everywhere on March 31st. He also has many musical projects in-the-works, including "muscular dystrophy love letter," "Wheels: An Original Musical," and "Happenstance," his debut and upcoming musical comedy album.

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.

In this Quest Podcast episode, we chat with PJ’s father, Brian Nicholoff, Director of Patient Access at the Little Hercules Foundation, Amy Aikens and emeritus professor of Pediatrics and Neurology, Dr. Jerry Mendell. Brian has been an advocate for Duchenne Muscular Dystrophy for nearly 40 years and Amy advocates for treatment access concerns and works directly with individuals and families to address individual barriers. Dr. Mendell, in his over 50-year career, has devoted efforts to understand Duchenne muscular dystrophy and pioneered the standard of care that led to FDA approval for deflazacort and vamorolone. Their goal is to advocate for the creation successful treatments and eventually a cure for those effected by neuromuscular diseases. They join us to share their experiences, expertise, and advice.

Guests: 

Brian Nicholoff has been married to his wife, Barbara, for 46 years and is a life member of the Professional Golfers Association of America. They are parents to Phillip James (PJ) 1982 and Justin Alan 1987. Brian is retired and enjoys spending his time with his wife, Justin and his friends. He especially loves traveling, music and writing poetry. He has been an advocate for Duchenne Muscular Dystrophy for nearly 40 years.

PJ passed in 2013 and the Protocol in his name was established in March of 2015. It is now in several languages and referred to by countless families and physicians in many parts of the world.

Connect with Brian: 

Amy Aikins has been led to her current professional career path from her experience as a mother to a young man with Duchenne Muscular Dystrophy. She has utilized her personal experience navigating systems and overcoming barriers for her son to assist others. 

Amy has spent her professional life working in various capacities within organizations focused on serving individuals with disabilities and has a passion for helping people obtain access to the things that they need. In her current role as Director of Patient Access at the Little Hercules Foundation, Amy tackles treatment access concerns through extensive engagement with a variety of stakeholders, as well as involvement in various groups and projects focused on access issues within the rare disease community. In addition, she works directly with individuals and families to address individual barriers. 

Dr. Jerry R Mendell attended medical school at UT Southwestern Medical Center and Residency at Columbia University. Post graduate fellowship at NIH and first employment provided contact with first patient with Duchenne, inspiring decades of work as a translational clinician and researcher. Most of his achievements were done at Nationwide Children’s Hospital where he was recruited to establish a Neuromuscular Center. Over a 50-year career, he devoted efforts to understand Duchenne muscular dystrophy and ways to intervene. He was the lead author introducing prednisone for DMD treatment published in the NEJM in 1989. The importance is validated in over 30 publications. It is standard of care and led to FDA approval for deflazacort and vamorolone.

He is an emeritus professor of Pediatrics and Neurology at The Ohio State University and Nationwide Children's Hospital where he held Curran-Peters Endowed Chair in Pediatric Research. He is now a Senior Advisor at Sarepta Therapeutics. In 2024, he was named to the inaugural TIME100 Health most influential people in Health pioneering a new age of treatment for genetic diseases. Dr. Mendell was the 2024 recipient of the King Faisal Prize Laureate in Medicine. In 2020, he was elected to the National Academy of Medicine and was the first recipient of the American Society for Gene and Cell Therapy’s "Jerry Mendell Translational Medicine Award" now given to other scientists in his name each year at the annual meeting. He has authored 420 articles and written 3 books about muscle and nerve disorders and gene therapy. The Center for Gene Therapy at Nationwide Children’s has now been named in his honor, the "Jerry Mendell Center for Gene Therapy".

Connect with Dr. Mendell: 

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.

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.

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.

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.

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.

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.

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. 

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.

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.

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. 

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.

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: