Oct 22, 2024 | PAST TWYPP SESSIONS
Session Details Title: Spooky Soirée – Enjoying Halloween with PD for You and Your Kiddos Date: Tuesday, October 22, 2024 Moderator:Tiffany House Summary:Calling all Pompe Parents! Are you stuck thinking up costume ideas? Have you made an awesome one that you would...
Sep 24, 2024 | PAST TWYPP SESSIONS
Session Details Title: Balancing Pompe (School, Work & Life): How Do You Balance Yours? Date: Tuesday, September 24, 2024 Moderator:Tiffany House Summary:This Open Forum Discussion will focus on exploring the various ways members of the Pompe community juggle all...
Aug 16, 2024 | PAST TWYPP SESSIONS
Session Details Title: The Elementary School Experience: Building Success for IOPD/LOPD Children Through Collaboration and Partnership! Date: August 16, 2024 Moderator:Colleen Sackos Summary:This presentation will entail how to create partnerships and collaboration...
Aug 1, 2024 | ARCHIVES, NEWS
Project title: AutophagyThe cell's internal cleanup system that removes damaged or unneeded material. More control of glycogenA stored form of sugar used for energy. More in skeletal muscleMuscles that control movement and are commonly affected in Pompe disease. More...
Aug 1, 2024 | ARCHIVES, NEWS
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 IOPDA severe form of Pompe disease that begins in infancy and often affects the heart and...
Jun 23, 2024 | ARCHIVES, NEWS
University of California – San Francisco (UCSF) is excited to announce the rebranding of their phase 1 clinical trail of In Utero EnzymeA protein that helps the body carry out chemical reactions. More Replacement Therapy as the PEARL Trial-PrEnAtan...
Feb 26, 2024 | PAST WEBINARS
Webinar Details Title: Evaluating gene therapies for Pompe disease – clinical trial goals and assessments Date: Monday, February 26, 2024 Speaker:Jordi Díaz-Manera, MD, PhDChristine S. BrownMark Walzer, PhD Webinar Overview:This Astellas Gene Therapies...
Feb 10, 2024 | ARCHIVES, EDITORIALS
By: IPA posted on: May 27, 2019 The IPA has authored an article titled “The role of patient advocacy organizations in shaping medical research: the Pompe model,” and we are excited to announce that it has been accepted for publication. The article focuses on...
Jan 29, 2024 | NEWS, ARCHIVES
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...
Dec 28, 2023 | ARCHIVES, NEWS
The AMDA is excited to announce a research grant opportunity for applicants who are involved in Pompe DiseaseA rare genetic disease in which the body cannot properly break down glycogen, leading to buildup tha... More research. This grant opportunity was made possible...
