About the AMDA
Recent News / Articles
Burnout, Creativity, and Rest
For me, music can be one of the best...
Tiffany House and Maryze Schoneveld van der Linde Honored at Sanofi’s Global Rare Impact Awards
At Sanofi’s inaugural Global Rare...
Morgan’s Story: When Hope Met Hurricane Katrina
Editor's NoteIn the early years of...
Grief and Rare Disease: Recognizing Loss and Building Grief Literacy
This past May, our hearts broke twice....
Closing the Gaps: Pompe Disease Newborn Screening and the Importance of RUSP Alignment
A Milestone for Pompe Families This...
Three Decades of Impact: Celebrating 30 Years of the AMDA
A Legacy of Leadership, Love, and...
Upcoming
Webinar
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.
Upcoming Talking With Your Pompe Peeps Session
Infusion Day Playbook: Stories, Tips, and Support
Infusions can feel overwhelming at first — and then, over time, they become part of life. In this Talking With Your Pompe Peeps session, Alison Breitbarth (Grant’s Giants) will help us talk openly about what it looks like to normalize infusion day for kids and families — while keeping the conversation welcoming for anyone navigating infusions at any age.
We’ll swap first infusion stories, share what helped (and what we wish we’d known), and trade practical tips for making the day smoother — from comfort items and routines to mindset shifts that build confidence. Alison will also share ideas behind her Infusion Play Kit, designed to bring playfulness into a day that can otherwise feel stressful.
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Acid Maltase Deficiency Association
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If you are interested in learning more about Pompe Disease and would like to make a contribution in support of necessary research, please contact us at:
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THE AMDA
PO Box 700248
San Antonio, Texas 78270 USA