Save the date:

 AGSD-UK Conference,
 Wyboston Lakes Executive Centre,  Bedfordshire. 
 20-21 October 2018


 GSD Camp (click here)

 Whitemoor Lakes

 Lichfield, Staffs.

 28-30 September 2018



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.