AGSD-UK is a registered charity supporting those affected by Glycogen Storage Disease (GSD).
We aim to provide support throughout the UK to patients and their families. In more detail we:
- Protect and promote the best interests of those affected by any of the GSDs.
- Communicate GSD related matters by commissioning, publishing and distributing relevant material.
- Contribute to the advancement of treatments and cures through sponsorship and support 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
• Von Gierke described an illness now called Glycogen Storage Disease 1 (von Gierke’s disease).
• AGSD-UK founded by Ann Phillips and Sue Del Mar, mothers of children affected by Glycogen Storage Disease.
• Registered as a charity with the Charity Commission.
• Organised the first family conference.
• 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.
• Funded the involvement of an exercise physiologist at the McArdle Clinic.
• Co-founded the International Pompe Association with support groups from other nations.
• Published agsd.org.uk web site dedicated to disseminating information on GSDs.
• Vietnam bike ride – first major fundraising event.
• 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”.
• Appointed AGSD-UK Family Support Officer for Pompe, funded by Sanofi-Genzyme and based at St Mary’s Hospital, Manchester.
• AGM agreed that the association should convert to a company limited by guarantee.
• Recruited first paid employee.
• Opened office base in Droxford, Hampshire.
• “Walk over Wales” – 32 day awareness raising event.
• Published “The McArdle Disease Handbook” on the medical and scientific research into GSD5.
• 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”.
• Founding partner in the Euromac Registry.
• Appointed a Specialist Care Advisor – Pompe.
• Wrote and published first in series of “Medical Overview” booklets to support decisions in primary care.
• 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.
• 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.