The AGSD-UK 2015 conference was a great success:

I can't thank you and the AGSD-UK team enough for the superb organisation of the conference this year! The workshops and range of speakers was fantastic. It was so good to meet the key physicians who are helping with the condition. Another incredible outcome of the conference was that our daughter made two friends the same age as her whom we intend to meet with and to keep in contact with. As the condition is rare it is invaluable that she has friends to share her struggles with. It is also great that my husband and I now have friends who are GSD parents too! What a fantastic thing you do - thank you so much, from all of us!
– Victoria


History of the AGSD-UK

The AGSD-UK is a very small charity working on behalf of a small group of people affected by Glycogen Storage Disease, yet it achieves a significant amount. Here are some of its milestones.



  • McArdle patients complete 210 mile "Walk over Wales" to raise awareness and sponsorship.



  • Mark Upham runs the London Marathon in aid of AGSD-UK.
  • Members agree at the AGM that the association should convert to a company limited by guarantee.



  • Sponsors Dr. Ratna Puri on Liver Glycogen Storage Disorders Course in Manchester to help improve management of GSD patients in India.
  • Executive Committee trials use of tele-conferencing to cut costs.



  • Gary Baker, James Clarke and Luca Venditto raise over £12,000 for the association by running the London Marathon.
  • German Glycogenoses Family Support Group visit UK McArdle's clinic with view to establishing a clinic in Germany.
  • Family support officer for Pompe appointed, funded by Genzyme and accommodated by St Mary's Hospital, Manchester.
  • AGSD sponsored McArdle research presented at World Muscle Society international congress.



  • Organised second sponsored bike ride this time in Costa Rica, raising £30,000.
  • Welcomed the broad label approval of Myozyme as a treatment for Pompe disease.
  • Provided grant for McArdle research to the Wolfson Center for Inherited Neuromuscular Diseases.
  • Converted the Newsletter to electronic distribution.


  • Appointed part time patient liaison officer for Pompe disease in co-operation with the Muscular Dystrophy Campaign.


  • Published the analysed results of the worldwide survey of McArdle patients.


  • Initiated first major fund raising event - a sponsored bike ride in Vietnam, raising £70,000.


  • Purchased a treadmill for exercise assessment at the McArdle Clinic, Oswestry.
  • Hosted an on-line survey of McArdle patients worldwide.


  • Published web site dedicated to disseminating information on GSDs.


  • Supported the enzyme replacement therapy work of Drs Arnold Reuser and Ans van der Ploeg from the Pompe Fund.
  • Helped to launch the UK's only Type V McArdle clinic, in Oswestry.


  • Invited Dr A E Slonim from New York to lead first AGSD-UK workshops on McArdles and Pompe.


  • Registered as a charity with the Charity Commission.
  • Organised first family conference.


  • Founded by Ann Phillips and Sue Del Mar, mothers of children affected by Glycogen Storage Disease.