Video Library

Video Library

A growing collection of video presentations from our "Zoom into Pompe" (ZiP) online meetings and other sources. Please subscribe to our YouTube channel to find them easily:

Pompe Support Network YouTube Channel

  • ZiP004: Nutrition and COVID-19 - Part B

    Posted On: 05/08/2020

    With guest speaker, Dr Gisela Wilcox

    The second part of Dr Wilcox's presentation to the Pompe Support Network highlighting valuable information in regards to nutrition and COVID-19.


    Dr Gisela Wilcox, Consultant in Metabolic Medicine, The Mark Holland Metabolic Unit, Salford Royal Foundation NHS Trust.

    Dr Wilcox manages Pompe adults at the Highly Specialised Service for LSDs at Salford Royal, she is a Clinical Ambassador for Medics 4 Rare Diseases, and an Honorary Senior Lecturer at the University of Manchester.

  • ZiP 004: Diet and Nutrition advice for Pompe Disease - Part A

    Posted On: 05/08/2020

    With guest speaker, Dr Gisela Wilcox

    With guest speaker, Dr Gisela Wilcox, Consultant in Metabolic Medicine, The Mark Holland Metabolic Unit, Salford Royal Foundation NHS Trust.

    Dr Wilcox manages Pompe adults at the Highly Specialised Service for LSDs at Salford Royal, she is a Clinical Ambassador for Medics 4 Rare Diseases, and an Honorary Senior Lecturer at the University of Manchester.

    This is the first part of Dr Wilcox's presentation which discusses in detail dietary measures to reach an ideal body-weight and maintain healthy muscles.

    Following Dr Wilcox's presentation, there is a Q&A session with questions from members of the Pompe community which provides additional valuable information of diet and nutrition. We would particularly draw your attention to advice given on Vitamin D supplementation, the Mediterranean diet, and the importance of regular and well-balanced meals.

  • ZiP 003: Patients Introduction to Respiratory Muscle Training for Late Onset Pompe Disease

    Posted On: 13/05/2020

    A 30 minute presentation by Dr Harrison Jones discussing the benefits of Respiratory Muscle Training for LOPD; suggesting that with supported training, significant improvements to the respiratory response are possible.

  • ZiP 002: Physical Wellbeing

    Posted On: 13/05/2020

    Lecturer in physiotherapy, Steve Dando, provides 35 minutes of advice on safe exercises for people living with Pompe disease. Steve has extensive experience of working with the UK Pompe community as a neuromuscular physiotherapist.