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How we did
Have you read the latest news?
AGSD-UK working with NICE towards approval for new treatment for Pompe disease.
The latest edition of our magazine Glisten is here, dated August 2020. Packed with news, reports, research and fundraising ideas.
A survey looking at the Covid-19 impact on wellbeing in families of children with rare neurodevelopmental and genetic disorders study
Pompe Support Team’s Medical Overview leaflet is now being used in Australia.
Audentes is now enrolling patients with late-onset Pompe disease in the Phase 1/2 clinical trial.
AGSD-UK are offering a free online mindfulness course to those working with or affected by GSD.
This webinar will explore educating physicians in rare diseases. It is open to all.
Metabolic Disorders Awareness Week runs from 06.07.20 – 12.07.20. see how you can be part of it.
What do you need from AGSD-UK?
For personal stories on an individual GSD, visit the page for that GSD.
What and who we are
- National support group for those affected by Glycogen Storage Disease (GSD) and their families.
- Membership based with an elected board of trustees.
- A company limited by guarantee and a registered charity.
- Collaborators with UK rare disease and international GSD groups.
You tell us how we did…
It is really valuable for staff, volunteers and members to hear feedback on our efforts. Please use the “Message us” form.
Well done for latest GlistenA big thank you to everyone involved in the latest edition of Glisten. Quite a big issue this time, full of interesting stories and it looks great. It’s really moved forward, looks professional and inviting to read - a big well done to everyone!
Amanda Porter, UK
Jane and Julie PIP help thanks
DWP wrote about my PIP tribunal. They’d looked at the decision again and increased my points for the daily living component. I have been awarded that component and mobility at enhanced rate. I couldn’t have done it without help from Jane and Julie. I am very grateful.
Ben Tomsett, UK
GSD Family Day thanks
Thank you to Jane for all your hard work organising the GSD Family Day at the Royal Victoria Infirmary Newcastle. It was a really good opportunity for all the families. See you again next year.
Alice and Sandra, Paediatric Metabolic Dietitians UK
Chance to give feedback
Thanks for enabling us to participate in the useful parent consultation meeting about trial design and giving us a chance to give some feedback, which wasn't done before. It also gives some confidence to us parents as our points of view are taken into account.
Just to let you know we have banked the money raised through the grant applications that you made for us. We are very thankful for this money, it takes the pressure of us a little during our frequent hospital trips with our little girl.
Answers to unusual issues
Thank you so much for your response. I have passed on the information. I am very grateful to have someone like you to ask when these sorts of issues arise, and I thank you most sincerely. I hope we can meet sometime.
Supported and not feeling alone
It means a lot to me to know that I have support from you, the AGSD-UK website and the McArdle clinic. It is good to know there are other people who understand our condition without us having to explain, and it’s nice to feel I am not on my own.
Help with diagnosis
Regarding my search for a diagnosis, hopefully things are moving forward. I had to get my medical records and go through them to ensure I was being tested correctly. You were the catalyst, so thank you for all your help and I’ll be in touch.
Keeping nearly pain free
Just writing to say hello. Still no formal diagnosis, but we are tackling it bit by bit and, meanwhile, the second-wind training keeps me nearly pain-free and functional. Very grateful for all of your help over the years.
Thank you to Pompe friends
Thank you to my Pompe friends, Julie Garfield is a real treasure who inspires me to try even harder; the AGSD-UK Specialist Care Adviser, Jane Lewthwaite, who never fails to be there when I need her; and the PST for working to make lives better.
John Foxwell, UK
Always there for me
Very caring, patient, informative, supportive and knowledgeable about McArdle’s. Always good about answering questions anyone has about GSD5 and related health concerns. Been there for me whenever I’ve needed.
Marie Buck, USA
Understanding, supportive and informative
AGSD-UK were a lifeline when I was first diagnosed with Pompe. Understanding, supportive and informative.
Jane Randall, UK
Huge thanks for PIP help
Huge thanks to Jane Lewthwaite for all her help and support with my PIP application. Very much appreciated.
Help for first time in 37 years
Dear Andrew, thank you for helping me better understand and accept my condition. It was the first time in 37 years that someone actually helped me to do that and to fully live my life guilt-free.
Christos Panoilias, Greece
You have given me confidence that I have found the right source to turn to if I need to investigate whether I am a carrier of Pompe as well. It is very a comforting thought. Thank you very much.
Advice and expertise
I can’t express how grateful we are to Andrew Wakelin for his superb advice and support. And to Jane Lewthwaite, without whose professional expertise, dedication and hard work we’d be at a loss. So a very heartfelt ‘Thank you’.
Lorraine Gibney, UK
Welcome… and thanks
Welcome Neil, looking forward to seeing AGSD-UK develop further under your leadership. Many thanks to Allan for all your hard work and support over the 8 years since I was diagnosed. Best wishes to you and Barbara.
Amanda Porter, UK
I am so lucky to get to know your organization and be exposed to other professional expertise, and most importantly get to learn from patients’ stories.
Medical professional, UAE
Forever in my mind
I enjoyed the photos of the walking course this year. I will always be grateful for my week in Wales. What I learned from you will forever be in the back of my mind.
Lorraine Baguley, Australia
The organisers of the Inca Trail trek to Macchu Pichu have accepted the letter you wrote and I am now cleared to go. Thank you so much, you are a star!
Deborah Corcoran, UK
Keep in touch
Register FREE with AGSD-UK to keep in touch with the latest developments and future conferences, workshops, courses and fundraising events. It helps you keep in touch with other patients and families. You will receive our magazine, Glisten, by email.