Read some personal stories

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

AGSD-UK were a lifeline when I was first diagnosed with Pompe. Understanding, supportive and informative.

Jane Randall

Huge thanks to Jane Lewthwaite for all her help and support with my PIP application. Very much appreciated.

Andrea

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.

Rose

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

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

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

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