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Our organisation and milestones

The AGSD-UK is a charity supporting those affected by Glycogen Storage Disease (GSD).

It aims to provide support throughout the UK to sufferers and their families. In more detail we:

  • Protect and promote the best interests of those affected with a GSD.
  • Act as a vehicle of communication on GSD related matters by publishing and distributing relevant material.
  • Contribute to the advancement of treatments and cures through sponsorship of research, studies and trials.
  • Act as a focus for educational, scientific and charitable activities related to GSD.
  • Liaise with other GSD associations around the world.

Some of our key milestones

1929
• Von Gierke described an illness now called Glycogen Storage Disease 1 (von Gierke’s disease).

1986
• AGSD-UK founded by Ann Phillips and Sue Del Mar, mothers of children affected by Glycogen Storage Disease.

 

1988
• Registered as a charity with the Charity Commission.
• Organised the first family conference.    

1996
• Awarded a grant to a research team at Erasmus Medical Centre, Rotterdam. The bioreactor developed with this grant proved the principle of Enzyme Replacement Therapy for Pompe disease.
• Supported the start of a McArdle Disease Service.

1997
• Funded the involvement of an exercise physiologist at the McArdle Clinic.

1998
• Co-founded the International Pompe Association with support groups from other nations.

1999
• Published agsd.org.uk web site dedicated to disseminating information on GSDs.

2003
• Vietnam bike ride – first major fundraising event.

 

2005
• Appointed part time patient liaison officer for Pompe disease in co-operation with Muscular Dystrophy UK.
• Sponsored research into “Model Systems for Developing Therapies for McArdle Disease”.

 

2007
• Appointed AGSD-UK Family Support Officer for Pompe, funded by Sanofi-Genzyme and based at St Mary’s Hospital, Manchester.

 

2009
• AGM agreed that the association should convert to a company limited by guarantee.

2010
• Recruited first paid employee.
• Opened office base in Droxford, Hampshire.
• “Walk over Wales” – 32 day awareness raising event.

2011
• Published “The McArdle Disease Handbook” on the medical and scientific research into GSD5.

2012
• Produced a short film “Hope in the Genes” to raise awareness of AGSD-UK.
• Published a book “101 Tips for a good life with McArdle Disease”.

2013
• Founding partner in the Euromac Registry.

2016
• Appointed a Specialist Care Advisor – Pompe.
• Wrote and published first in series of “Medical Overview” booklets to support decisions in primary care.

2017
• 
Developed two eLearning modules for GSDs, hosted by the Royal College of General Practitioners website.
• Wrote and published the book “101 Tips for a better life with Pompe Disease”.
• New logo designed and adopted.

2018
• Held family camp for children affected by GSD.
• Published the book “Top Tips for GSD3”.
• Worked with RCGP to launch eLearning modules on GSD.
• Facilitated first meeting of UK specialists to create Hepatic GSD Management Guidelines.