TOP NEWS
Grief and Rare Disease: Recognizing Loss and Building Grief Literacy
This past May, our hearts broke twice. Within just two weeks, the Pompe community said goodbye to two extraordinary advocates: Maryze Schoneveld van der Linde with the IPA, and our beloved Tiffany House with AMDA/IPA. Their passing illuminated something profound: grief lives everywhere in our community, often in ways we don’t recognize or name.
The parent who mourns the carefree childhood their child will never have. The adult with late-onset Pompe disease who grieves the marathon they’ll never run again. The spouse watching their partner’s strength fade, carrying the weight of tomorrow’s uncertainties. These experiences are real, valid, and profound, yet they often go unacknowledged. We call this grief illiteracy, and it’s time we changed that conversation.
Grief isn’t weakness. It’s love with nowhere to go. It’s hope recalibrating. It’s proof that something mattered deeply to us. When we learn to recognize grief’s many forms and respond with compassion, we create space for authentic healing and build a community where no one has to carry their sorrow alone.
Read the full article to explore the different types of grief, understand how it affects our daily lives, and discover practical ways to build grief literacy in the Pompe community.
OTHER NEWS
2024 Helen Walker Research Grant For Pompe Disease Now Accepting Applications
The AMDA is excited to announce a research grant opportunity for applicants who are involved in Pompe Disease research. This grant opportunity was made possible by the 2024 Pull for Pompe, a private fundraiser held by the Precast Manufacturer’s Association of Texas...
Essential Update: New Treatment Approaches for Late-Onset Pompe Disease
The AMDA is partnering with Medlive to bring this exciting program to HCPs in the Pompe community. Join leading experts Dr. Tahseen Mozaffar and Dr. Barbara Burton as they discuss late-onset Pompe disease (LOPD). Hear the latest advancements, including newly approved...
2023 Helen Walker Grant Recipient
Project title: Autophagy control of glycogen in skeletal muscle This year, the AMDA was fortunate to receive 13 grant applications focusing on both clinical research and basic science. It has been a challenge to select one. Dr. Wyant was chosen because he has embarked...
Join us for the first “Talking With Your Pompe Peeps” session on August 16, 2024!
We are excited to announce that the topic of our first "Talking With Your Pompe Peeps" session is "The Elementary School Experience: Building Success for IOPD/LOPD Children Through Collaboration and Partnership"! Join us August 16, 2024 at 1 PM CT for an open forum...
PEARL Trial-PrEnAtal enzyme Replacement for Lysosomal storage diseases
University of California - San Francisco (UCSF) is excited to announce the rebranding of their phase 1 clinical trail of In Utero Enzyme Replacement Therapy as the PEARL Trial-PrEnAtan enzyme Rreplacement for Llysosomal storage diseases. "We have rebranded our...
2024 PCMA Pull for Pompe Fundraiser
The AMDA is excited to announce that the 13th Annual PCMA’s Pull for Pompe will take place on Saturday, April 27, 2024 at the National Shooting Complex in San Antonio, Texas! The Pull for Pompe clay shooting event is designed for all ages and ability levels. Please...
2023 Helen Walker Research Grant For Pompe Disease Now Accepting Applications
The AMDA is excited to announce a research grant opportunity for applicants who are involved in Pompe Disease research. This grant opportunity was made possible by the 2023 Pull for Pompe, a private fundraiser held by the Precast Manufacturer’s Association of Texas...
Amicus Therapeutics Announces FDA Approval and Launch of New Treatment for Pompe Disease
PHILADELPHIA, Sept. 28, 2023 (GLOBE NEWSWIRE) -- Amicus Therapeutics (Nasdaq: FOLD) today announced that the U.S. Food and Drug Administration (FDA) has approved Pombiliti™ (cipaglucosidase alfa-atga) + Opfolda™ (miglustat) 65mg capsules. This two-component therapy is...
CALL to participate in IPA Project Every Move Counts
At International Pompe Day the International Pompe Association kicked off the Every Move Counts project. This project focuses on raising awareness of the importance of movement. We all have different abilities and levels of disability, but the important thing to...
2024 Acid Maltase Deficiency Association (AMDA)/International Pompe Association (IPA) Conference date has been set!
Dear Pompe Warriors and Patient Community, We are excited to announce the upcoming 2024 Acid Maltase Deficiency Associate - International Pompe Association (AMDA-IPA) Conference, a momentous event dedicated to advancing knowledge, support, and advocacy for individuals...
Acid Maltase Deficiency Association
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