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AGSD-UK Conference 2010
The Conference will be in central London on weekend of 20th-21st November. More details soon.
Walk over Wales... every step counts 2 July to 2 August 2010 Sponsored walk raising money for AGSD-UK. 210 miles. Details.
Walking with McArdle's - Wales An opportunity to enjoy a week's walking holiday in Snowdonia and learn how best to cope with McArdle's. July 2011. Details.
We hope these short profiles will help you get to know the people who volunteer their time and expertise to direct and manage the Association on behalf of our members. If you are interested in the possibility of becoming a Trustee or volunteering as an officer, please contact the Chairman, Andrew Wakelin
Although he had symptoms from age 4 Andrew didn’t get a diagnosis of McArdle Disease (GSD Type V), until age 30. He had no help at all for 20 years until a friend’s internet search led to him joining the AGSD in 1999. He worked with Nick Owston to support the UK’s only McArdle clinic and was appointed the AGSD’s Type 5 Co-ordinator in 2004. Andrew is less badly affected than many and feels this may be down to having avoided anaerobic exercise and kept active with aerobic exercise from his early years. He hopes to help other people with McArdle’s improve their life experience of the disease.
A typographic designer by training, Andrew was for 30 years managing director of a design company he built from scratch. Then for 10 years Chairman of a company developing software for the design, advertising and publishing industries. Now aged 60 he is a part-time consultant and devotes a lot of effort to a number of charities including the AGSD.
An ex-paraglider pilot, accident investigator and world record holder (long superseded), Andrew was for many years on the UK governing body for paragliding. He brings that experience to the AGSD in addition to his experience in the management and development of small businesses and charities. In 2009 Andrew assisted the Trustees to convert the Association into a company limited by guarantee and was elected a Trustee. He was elected as Chairman of the Association in November 2009 and is keen to see it improve its governance and expand its activities.
Andrew lives in mid Wales. Using techniques he has developed to cope with his McArdle’s he has climbed all 188 of the Welsh mountains over 2,000 feet, and mountains around the world. He copped out 200 feet short of the 19,340 feet summit of Mount Kilimanjaro blaming altitude sickness rather than his McArdle‘s. Andrew organised and led the "Walk over Wales" awareness- and fund-raising event in 2010.
After a varied education involving some ten educational establishments dotted round the world Sue obtained a degree in mathematics at London University. After that she worked as a Sales Engineer with Hawker Siddeley on the Trident aeroplane until she got married. Later on she became a science teacher.
Hugo, Sue’s second child, was born with GSD Type Ia and her husband and she went through many of the traumas associated with having a GSD afflicted child.
Sue met Ann Phillips in 1974 and together started AGSD (UK) with a meeting in Sue’s house for just a few families. From this humble beginning the annual meetings graduated through scout huts, public houses to our present venues in hotels. AGSD (UK) was registered as a charity with a mission statement to support parents, raise the GSD profile within the medical profession, distribute information and fund research.
Sue has been AGSD Treasurer and Membership secretary since its inception and has been amazed at the growth of our membership over the years. In the early days we only had Type I and Type III members as they were almost the only types diagnosed by doctors. However as the years progressed additional types were diagnosed and as a result our membership also diversified into more types.
Sue feels very lucky in that Hugo was monitored from six months old by Professor Wolff and then Professor Leonard at Great Ormond Street Children’s Hospital until he was nearly twenty years of age, which was well beyond their remit. Sue had a meeting with Professor Elias, who was head of the Liver Unit at Birmingham Queen Elizabeth Hospital and he agreed to set up an adult clinic which would also take patients from the Birmingham Children’s Hospital when they became adults. Hugo became their first patient.
Allan Muir is an aerospace engineering software consultant by profession but became involved in the AGSD-UK after his son was diagnosed with Pompe Disease (GSD Type II) at the age of two. Since attending their first AGSD-UK meeting at a scout hut in Kent, Allan and his wife Barbara benefitted from the extensive networking with other families and medical professionals afforded by this small charity. In 2001 Allan succeeded Kevin O'Donnell as Pompe Coordinator and shortly afterwards was elected onto the board of the International Pompe Association (IPA), a federation of nearly 40 national patient support groups. He now Chairs the IPA and so splits his spare time between the UK and global Pompe communities. Allan recognises the need for small charities to network widely and so maintains close connections with other Neuromuscular and metabolic disease groups, particularly the UK Lysosomal Storage Disease (LSD) groups.
The approval of Myozyme for Pompe Disease has brought with it a much greater awareness of the condition within the UK. Consequently, as the number of diagnoses increases and as the surviving Pompe infants develop and meet previously unattainable milestones, the demands on the charity are greater than ever. For this reason Allan is working hard with the AGSD-UK board to develop the charity into a professional service for all GSD families.
Allan took part in the sponsored Vietnam Bike Ride in 2003 and then organised the Costa Rica Bike Challenge in 2006. Both were ground breaking for the charity and raised substantial funds.
Allan’s son Jamie was enrolled on a trial for enzyme replacement therapy at the age of 15 involving fortnightly trips to Rotterdam for over a year. Despite surgical correction for scoliosis his still plays a tough game of tennis and is following his dream to work in the film industry.
Clive qualified in medicine at Leeds Medical School in 1955. He did postgraduate training in Leeds, London and Yale, ending as a consultant at St Mary’s Hospital and Medical School London from 1969 to 1991.
The first sign of muscle problems occurred in 1966, aged 34. Many different diagnoses were entertained over the years and progression was exceedingly slow. The correct diagnosis (Pompe’s Disease, GSD Type II) was made in 1997 when very serious respiratory failure occurred, necessitating 10 weeks in intensive care. Since that time, Clive has used a ventilator at night.
Clive brings a high level of medical knowledge to help the association and his own experience of a glycogen storage disease has been invaluable in allowing him to empathise with other patients and families.
Clive was the Honorary Secretary of the AGSD from 2002 to 2009 but decreasing mobility has necessitated reducing his commitment somewhat.
Clive has been extremely fortunate in having enjoyed selfless and loving support from his wife Joyce as his disablement has increased. He has three adult children who are all carriers of the Pompe gene and five grandchildren who all appear to be quite normal. The family is still thinking about whether to have them tested for the gene.