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Recently Added
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.
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.
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2024 Helen Walker Research Grant Recipient: Dr. Jaymin Upadhyay, Boston Children’s Hospital, Harvard Medical School
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