International Pompe Day - Spring Meeting
Saturday 15th April 2023
10am to 4pm BST
NeuroMusclar Centre, Woodford Lane West, Winsford, Cheshire, CW7 4EH
Free entry to anyone within the Pompe community
REGISTRATION FORM
Please bring a packed lunch – Hot and cold drinks will be available.
The centre is fully accessible with plenty of parking spaces.
The NMC has recently refurbished their toilet area, so all toilets at the centre are fully accessible and equipped with riser seats and a hoist.
(If required, Photos of the toilet area are available upon request)
Enjoy a relaxed and informal day, with time to see the centre’s facilities and chat with invited guests and old friends.
Programme
We have a flexible agenda for the day, and hope to share a wide array of topics, ranging from our own projects, research into rehabilitation technologies, through to novel Cell and Gene Therapies (C>) and small molecule Substrate Reduction Therapies (SRT) that may even hold hope for treating the central nervous system.
Prof Mark Roberts, Consultant neurologist at the Salford Royal hospital, will discuss current treatment options and medical research into future therapies.
Allan Muir, trustee Hulya Apaydin and Alex Jones recently attended the WORLD Symposium in Orlando where they represented the patient voice with the many companies researching future therapies. Allan and Alex will be happy to discuss the event with you.
Kevin Annesley is testing the Mollii Suit we’ve hired and will discuss its benefits for Pompe.
Virtual Reality has been shown to have both physical and emotional benefits. We’ll have a VR Headset to demonstrate the programme of VR experiences, developed for Pompe by VR Healthy.
You can watch Katie Hoolahan (VR Healthy Managing Director) recent presentation at our Autumn Pompe meeting HERE
Andrea Duckworth, who has Pompe Disease and is a regular physio client at the Neuromuscular Centre (NMC), will be on hand to share her experiences. Staff from NMC will be able to show you around the facilities, including the specialised gym.
Travelling Abroad. Andrea Duckworth has suggested that we investigate a way of translating useful words for those tricky moments overseas. We will share our ideas with you and together develop a simple translator for international travel.
This little thing we do. We’re creating a new illustrated book of suggestions on how to enjoy life with Pompe. It’s not quite ready for publication, but we’ll share our progress with you.
Feel free to share any of your own ideas or questions that could improve our community’s enjoyment of life - hello@pompe.uk
