Zoom into Pompe (ZiP) online meetings

Posted On: 07/05/2020 Recently Posted!

Our Online ZiP meetings are planned to continue beyond the current CODID-19 crisis, but they are posted in this section because current topics are chosen to have relevance to maintaining good health and resistance to the effects of the coronavirus.

Please register (free) with Pompe Support Network to ensure that you receive all notifications of future ZiP meetings.

Recordings of presentations given during ZiP meetings will be posted on our YouTube Channel which can easily be accessed via our Video Library.

ZiP 003: Respiratory Health:

"Introduction to respiratory muscle training in late-onset Pompe disease"

Time: Saturday April 25, 2020 at 3pm (London)

Guest Speaker: Dr Harrison Jones M.D., Ph.D., Duke University Medical Centre, North Carolina, USA.

Dr Jones will discuss ways of improving respiratory health, and will discuss his team's research into the benefits of Respiratory Muscle Training (RMT).

ZiP 002: Physical wellbeing

Time: Apr 11, 2020 at 3pm London (COMPLETED)

Guest specialist: Steven Dando, Lecturer in Physiotherapy, School of Healthcare Sciences, Cardiff University, Wales.

The second "Zoom into Pompe" (ZiP) meeting was a community discussion about physical health. It is especially important at this time and the meeting will provide an opportunity to share your experiences and learn from others.

We were joined by Steven Dando who spent several years as a specialist neuromuscular physiotherapist, working with UK Pompe adults to develop a deeper understanding of beneficial exercise for Pompe disease. Steve was be available to talk about his experience and answer questions.

A short report and an edited recording of the webinar will be posted here shortly.

ZiP 001: COVID-19 and Pompe in the UK

Friday 27th March 2020

Pompe Support Network held its first "Zoom into Pompe" (ZiP) online meeting to discuss the messages being received by the UK Pompe community and other issues arising from the epidemic. Allan Muir's notes of the meeting can be read here: 001 Pompe COVID Notes