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Past AMDA Webinars
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.
Overview of Breathing Muscle Weakness in Neuromuscular Disease (NMD)
Title: Overview of Breathing Muscle Weakness in Neuromuscular Disease (NMD)
Date: Thursday, September 25, 2025
Time: 1 PM CST / 2 PM EST
Speaker:
Andrea Klein
Webinar Overview:
An introduction to the concepts of breathing and coughing muscle weakness, this presentation highlights the importance of medical self-advocacy to ensure positive outcomes. Topics include the role of muscles in breathing, the relevance of blood gases, the evaluation process, appropriate interventions, and more.
The Role of Genetic Counselors on the Pompe Disease Care Team
Title: The Role of Genetic Counselors on the Pompe Disease Care Team
Date: Monday, June 9, 2025
Time: 2 PM CT / 3 PM ET
Speaker:
Erin Huggins, MS, CGC
Webinar Overview:
This webinar focuses on a unique type of clinician: the genetic counselor. Genetic counselors are specially trained providers that can have an important role on your care management team. In this webinar, we’ll describe who genetic counselors are, what they do, and how they can help you and your family navigate a diagnosis of Pompe disease. At the end of the webinar, there will be a Q&A session with the speaker, a board-certified genetic counselor with several years of experience in caring for individuals with Pompe disease.