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Past AMDA Webinars
Mental Health for Pompe Disease: The Importance of Being Understood
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
Speakers:
Heather Shorten
Nadia Bodkin, Pharm. D., MS
JC Muyl
Summary:
Living with Pompe diseaseA rare genetic disease in which the body cannot properly break down glycogen, leading to buildup tha... More 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.
Immune Responses to AAV Gene Therapy
Title: Immune ResponsesThe body's natural defense system reacting to substances it sees as foreign, including treatments li... More to AAVA harmless virus commonly used as a delivery system in gene therapy to carry healthy genes into cell... More Gene TherapyA developing treatment that aims to fix, replace, or add genetic instructions. More: Challenges and Emerging Solutions
Date: Thursday, April 23, 2026
Time: 12 p.m. CST / 1 p.m. EST
Speaker:
Abigail Benkert, MD
Summary:
Immune responsesThe body's natural defense system reacting to substances it sees as foreign, including treatments li... More to AAVA harmless virus commonly used as a delivery system in gene therapy to carry healthy genes into cell... More gene therapyA developing treatment that aims to fix, replace, or add genetic instructions. More remain a major barrier to its access and effectiveness. This talk will highlight key immune challenges and emerging strategies to overcome them, including antibody-cleaving enzymes and novel capsids designed to evade pre-existing immunity.
Making Sense of Research Studies and Registries
Title: Making sense of research studies and registries
Date: Thursday, February 19, 2026
Time: 7 PM CST / 8 PM EST
Speakers:
Karmen Trzupek
Ryan Colburn
Summary:
Have you heard about research studies and patient registries for Pompe diseaseA rare genetic disease in which the body cannot properly break down glycogen, leading to buildup tha... More? These studies are a critical tool in capturing the patient experience, which improves disease understanding, management, and treatment options.
Join this session to learn about the different types of research studies and patient registries for Pompe diseaseA rare genetic disease in which the body cannot properly break down glycogen, leading to buildup tha... More. What are the differences between them? How is the data shared and used? We’ll cover what you may want to consider when choosing to participate, cover a few of the historical registries that have contributed to progress in Pompe, and share an innovative patient led registry, Progress4Pompe, where patients own their data and choose how to share it.