Webinar Details
Title: Mental Health for Pompe DiseaseA rare genetic disease in which the body cannot properly break down glycogen, leading to buildup tha... More: The Importance of Being Understood
Date: Thursday, May 14, 2026
Time: 12 p.m. CST / 1 p.m. EST
Speakers:
Heather Shorten
Nadia Bodkin, Pharm. D., MS
JC Muyl
Webinar Overview:
Living with Pompe disease means navigating far more than the physical realities of a complex, progressive condition. The emotional and psychological toll, including the uncertainty, the isolation, and the challenge of finding care that truly sees the whole person, is a dimension of this journey that is too often left unaddressed. This webinar brings together three advocates at the forefront of mental health and rare disease: Heather Shorten of Pompe Alliance, Nadia Bodkin of the Rare Advocacy Movement, and JC Muyl of Mental Health For Rare.
Drawing on community research and lived experience, our presenters will explore the unique emotional challenges tied to living with Pompe diseaseA rare genetic disease in which the body cannot properly break down glycogen, leading to buildup tha... More, why feeling understood matters so deeply, and what meaningful mental health support can look like for this community. Whether you are a patient, caregiver, healthcare provider, or advocate, this is an opportunity to be part of an important and long-overdue conversation about whole-person care in the Pompe diseaseA rare genetic disease in which the body cannot properly break down glycogen, leading to buildup tha... More community.
Disclaimer: The content provided in this webinar is for informational purposes only and does not constitute an endorsement by the AMDA.
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Speaker Biographies
Heather Shorten
Founder / Executive Director, Pompe Alliance
Heather Shorten is the founder and Executive Director of Pompe Alliance. She earned her bachelor’s degree in Sociology from Cleveland State University in 1999 and a master’s degree in social work also from Cleveland State University in 2004. She began advocating for rare disease issues in 2016 after being diagnosed with Pompe Disease in 2015. As Executive Director, Heather directs all operations of the organization including media communications and advocacy. In February of 2025, she presented a poster at the WORLD Symposium about the research Pompe Alliance collaborated on regarding mental health in the Pompe community. Additionally, she presented at the World Muscle Society conference in 2023, speaking on my experience as a Pompe patient and the leader of a patient organization. Heather has also presented for industry partners as part of their Rare Disease Day and Pompe Awareness Day events. She is extremely passionate about equity in healthcare and have participated in several panel presentations on the topic. Additionally, Heather spent 15 years working with children and families in child welfare specializing in the co-occurrence of child abuse and domestic violence, presented at international conferences on the subject, and authored a paper on meaningful consequences for perpetrators of domestic violence.
Nadia Bodkin
Founder, Rare Advocacy Movement (RAM)
Nadia Bodkin is a rare disease patient advocate, movement builder, and founder of the Rare Advocacy Movement (RAM), the first community-based rare disease activist network dedicated to mobilizing patients and families to drive systemic change. Born with three rare genetic conditions, Nadia transformed her lived experience navigating complex medical challenges into a lifelong commitment to advocacy. While still a college student, she founded EDSers United, launching her career at the intersection of patient advocacy, healthcare innovation, and community leadership.
Over the years, Nadia has collaborated with organizations across the nonprofit, industry, and academic sectors, contributing to initiatives that advance therapeutic development, patient engagement, and rare disease awareness. Through this work, she has become a strong voice for elevating community-driven advocacy and ensuring that patients are not just included in conversations about healthcare, but empowered to help lead them. Through the Rare Advocacy Movement, Nadia is building a grassroots network of advocates committed to amplifying patient voices, strengthening rare disease communities, and influencing the future of healthcare policy and research.
Beyond rare disease advocacy, Nadia is passionate about supporting medically complex individuals and advocating for Veterans and their families, an influence shaped by her experience as the daughter of a U.S. Veteran. Nadia frequently collaborates with organizations, advocates, and professionals who are committed to improving lives and advancing a more equitable and humane healthcare landscape.
JC Muyl
Co-Founder, Mental Health For Rare
JC Muyl is a healthcare strategist with over 25 years of experience across the healthcare ecosystem, including life sciences, providers, digital health, and patient advocacy.
JC co-founded Mental Health For Rare in 2025, an initiative dedicated to bridging the gap between rare disease care and mental health support. The program works with rare disease communities to document their mental health needs, educate the care ecosystem, and expand access to therapists trained in the realities of living with rare conditions.
JC and the Mental Health For Rare team collaborate with patient organizations, clinicians, and researchers to conduct community mental health surveys, develop therapist training programs, and build a Rare Therapist Network capable of supporting patients and caregivers affected by rare diseases.
Earlier in his career, JC helped grow healthcare services company C3i from an early-stage startup into a global healthcare BPO organization. Over the course of his career he has led multiple healthcare startups, including global clinical trial support operations and pharmaceutical technology programs.
JC is deeply committed to advancing the mental health of rare disease patients and caregivers, an area where millions of families face significant unmet needs.