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Past AMDA Webinars
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.
Grief Happens in Rare Disease: Let’s Talk About it Already
Title: Grief Happens in Rare Disease: Let’s Talk About it Already
Date: Thursday, January 15, 2026
Time: 1 PM CST / 2 PM EST
Speaker:
Lisa Keefauver, MSW
Webinar Overview:
Given 100% of us experience loss, multiple times in our lives, means that when we work with humans, we’re working with grievers. That’s why our grief-illiterate culture is deeply problematic, causing so much unnecessary suffering. Based on her professional wisdom as a narrative-therapy trained social worker and her personal insights as a widow and cancer survivor, Keefauver combines metaphor, science, storytelling and humor to help audiences more fully understand the expansiveness and pervasiveness of both the sources and impact of grief in our work and personal lives.