15th April 2015

International Pompe Day

 

Pompe Update

Healthcare at Home

Deliveries Statement

 

GSD Giant 2015 

Annual cyclo-sportive.

6th September 2015

The Petersfield School

100, 64, 32 mile options

 

GSD Giant website
  

 

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.