Page 6 - AGSD-UK Annual Report 2017-18

WHAT WE DO
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AGSD-UK would like to see all much was learnt”. This year an e-learning
people with glycogen storage
disease given the opportunity to lead full and productive lives. To help achieve this, this is what we do.....
Support and Advocate
We are always willing to support and be an advocate for those affected in any way by Glycogen Storage Disease.
Encourage Peer Support
Currently there are support groups for GSD 2a (Pompe), GSD 5 (McArdles) and the newly formed Cori Action Team (GSD 3). These groups provide a sense of belonging to a community of people with similar experiences, providing ideas and approaches that are helpful, along with a sense
of validation. This year has seen some highly successful work accomplished, including the development and publishing of disease specific information leaflets and notably the popular walking course run by the McArdles group which was attended by people from all over the world.
Raise Awareness and Educate
On Rare Disease Day this year, members braved the snow and joined forces with Genetic Alliance, other charities and parliamentarians at the Houses of Parliament in a performance and display of unity with the One Voice choir outside Westminster. This was a great occasion to get the word out to the public and Members of Parliament. Members of AGSD-UK have been meeting with and talking to groups of student nurses. As a group directly affected by the disease, we are in the unique position to help professionals understand the experience of those affected as they go through the health system. Comments afterwards have included “absolute highlight of the course” and “so
module was developed in collaboration with the Royal College of General Practitioners with the intention of providing a short introduction to
GPs, hopefully improving early diagnosis and appropriate referrals. AGSD-UK supplies guides and leaflets on the different types of GSD, suitable for those affected, family, employers, schools and other youth organisations.
Collaborate
This year saw another highly successful conference at Nottingham with 185 members attending and 36 invited professionals, all with a view to improving care. Feedback from members was overwhelmingly favourable. Staff and members of AGSD-UK attended the International Glycogen Storage Disease conference in Groningen, The Netherlands this year. This gave one member from the UK the opportunity to run a networking session “Charting Experience of Myopathy in GSD 3” which was attended by delegates from all over the world. Throughout the year staff have been active in their collaboration with other UK patient organisations such as the UK LSD Collaborative, Muscular Dystrophy UK, and Genetic Alliance
in order to benefit members. AGSD-UK also has close international connections, through executive positions within the International Pompe Association and the International Association for Muscle GSD, and our membership of EURORDIS.
Fundraise
Cyclists, runners and walkers have covered miles, enduring aching limbs and sore feet. Cakes have been baked and then burnt, all in an attempt to support AGSD-UK and its work. One successful member who deserves a mention is Deborah Corcannon, affected by McArdles; she completed the London Marathon and raised £3,000.