Read some personal stories

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.

Melanie

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

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

Huge, huge thanks to Allan. Your dedication and hard work made an incredible difference. Welcome Neil. Hope to see you all at the conference.

Doris Noe

I really appreciate all your help and support, even though my daughter’s diagnosis was not a muscle GSD.

Anonymous mother

Thank you for writing the letter of support! I can’t begin to express how grateful I am. I feel confident that I will now be taken much more seriously.

Rebecca, USA

Thanks AGSD-UK. I properly loved Wales, such a wonderful time, the most beautiful weather and lovely friends.

Rachel Thomas

Thank you for once again arranging a wonderful week of walks, fun and friendship. We are indebted to you for all that you do for us.

Sioned Williams

We are learning a lot with you and your writings! Your work is changing the way people see illness, not only McArdle’s, but others. Never will thank you enough.

Dina, Portugal