Talking With Your Pompe Peeps Series Archive
Welcome to the AMDA’s Talking With Your Pompe Peeps Series archive. This is a special series of open-forum style presentations born from feedback we received from our 2024 AMDA/IPA International Pompe Patient and Scientific Conference. These presentations are meant to connect the Pompe community and foster support amongst its members. Each session is moderated by a member of the community who will present and guide the discussion while encouraging participants to share their unique experiences and views. Together we are stronger!
Past Sessions
Balancing Pompe (School, Work, and Life): How Do You Balance Yours?
Title: Balancing Pompe (School, Work & Life): How Do You Balance Yours?
Date: Tuesday, September 24, 2024
Time: 12 PM CT
Moderator: Tiffany House
Summary:
This Open Forum Discussion will focus on exploring the various ways members of the Pompe community juggle all of the things life throws their way. Come join the conversation!
The Elementary School Experience: Building Success for IOPD/LOPD Children Through Collaboration and Partnership!
Title: The Elementary School Experience: Building Success for IOPDA severe form of Pompe disease that begins in infancy and often affects the heart and muscles./LOPD Children Through Collaboration and Partnership!
Date: August 16, 2024
Time: 1 PM CT
Moderator: Colleen Sackos
Summary:
This presentation will entail how to create partnerships and collaboration between key stakeholders (family, general education team, special education team, healthcare team, etc.) for IOPD/LOPD children in elementary school. While every child’s journey is unique, ALL children have a right to experience growth and success as a student! Topics include 504 plans, IEPs, how to prepare for transitioning to elementary school, and time for questions and answers. We can all learn from each other!
Guide the Next Pompe Conversation
We’d love your input! Use this form to share feedback on past sessions, suggest topics you’d like to see covered, or volunteer as a moderator for an upcoming discussion. Your voice helps us shape meaningful conversations for the Pompe community.
Acid Maltase Deficiency Association
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San Antonio, Texas 78270 USA