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.

2010

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

2009

• 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.

2008

• 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.

2007

• 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.

2006

• 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.

2005

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

2004

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

2003

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

2000

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

1999

• Published agsd.org.uk web site dedicated to disseminating information on GSDs.

1996

• 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.

1993

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

1988

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

1986

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