We hope these short profiles will help you get to know the people who volunteer their time and expertise to direct and manage the charity on behalf of our members and all affected by glycogen storage disease.
If you feel that you have something to contribute please contact the Chairman via the “Message us” page.
Ailsa was appointed as a Trustee in October 2017.
Ailsa joined the AGSD-UK over 20 years ago, when her youngest son was diagnosed with GSD3a, or Cori’s, and for a couple of years was the GSD3 coordinator. In 2003, she and her husband organised a bike ride to Vietnam to raise funds for AGSD-UK. This successful adventure was the first of many for the association.
She has been a nurse for many years and hopes that she can bring bring to AGSD-UK her knowledge and experience of the health service and her understanding of the effect of a rare disease; in both a personal and a professional capacity.
Ailsa is keen to raise the profile of people with GSD, and particularly those with Cori’s, wanting to see improved treatment, care and support for all those affected. Since becoming a trustee, Ailsa has helped to set up the first support team for GSD3 – the Cori Action Team Support or CATS. This team has recently collaborated in the production of a new AGSD-UK publication, “Top Tips for Cori’s”.
Ailsa lives in Oxfordshire with her family and a few too many pets.
Appointed as a Trustee and Treasurer in 2020.
Sarah joined the board of trustees in 2020 and brought her knowledge and expertise in finance to act as our Treasurer. Added to this, she has been a pharmacist for the last ten years, working in both the public and the private sector. Her skills in both these areas will be a great benefit to the AGSD-UK.
She enjoys running and exploring the countryside with her dog.
Nick Jones, Interim Chairman
Nick was appointed as a Trustee in July 2018.
Confirmation in 2014 (at the age of 54) that Nick had GSD5 was a light bulb moment, it explained why he was different from others when it came to exercising. Shortly afterwards Andrew Wakelin (GSD5 Coordinator) contacted Nick and was very helpful in explaining the related literature that was available, the support provided by AGSD-UK and he also mentioned the forthcoming annual conference.
To find a sympathetic support network of patients and carers was a pleasant surprise and at the AGM Nick readily volunteered to be a patient representative on the AGSD-UK trustee board.
In 2005, after 20 years working as a professional engineer in the oil and gas industry, Nick co-founded an engineering design consultancy. Now with almost 100 employees he does little technical work, focusing instead on managing the head office, meeting clients, checking on projects and mentoring the junior engineers.
He hopes his business skills will be useful to AGSD-UK as it grows into a more structured organisation. Nick also sits on the fund-raising sub-committee of AGSD-UK, which is looking at ways of growing the charity’s finances to expand the services on offer and to fund more research.
Jayesh was appointed as a Trustee in October 2011.
Jayesh has been a director of 11 successful companies in the UK and Europe. He brings a wealth of business knowledge to the AGSD-UK and he is one of the longest standing trustees of the charity. He lives in Hertfordshire.
Having two teenage children with GSD1a has led Jayesh to dedicate his spare time to raising awareness and funds for the charity. The whole family has often been involved in organising and participating in our major fund-raising events over the years.
Jayesh also pursues his love affair with golf – his passion has taken him to play some of the best golf courses in the world.
Rob was appointed as a Trustee in June 2018.
Rob has a background in research and academia with particular interests in physiology, genetics and preventative medicine. This has led him to attain a doctorate in molecular physiology, and pursue a career in researching how genetic aberrancies in the human body may impact on health. He says his real passion is understanding how human skeletal muscle is regulated, and to identify key components that aid in maintaining the health of this tissue type. He also possess a masters’ degree in nutrition and metabolism, spending many years working in elite sport, supporting professional athletes to maximise the potential benefits from food and drink.
Rob’s family up-bringing has always been surrounded by charitable behaviour, his parents both serving as trustees for a number of non-profit organisations. Due to this, he has always desired the opportunity to use his scientific expertise to directly benefit the community, and thus when the chance to join the trustees at AGSD-UK arose, it was an opportunity he couldn’t let pass.
His aim is to offer the charity a closer link with the scientific community, aiming to help navigate AGSD-UK through successful years that will benefit those families directly and in-directly affected by this rare genetic disorder.
Rachel was appointed as a Trustee in 2020.
Rachel’s daughter Bronte was diagnosed with McArdle disease, GSD5, about 6 years ago. Having been a member for some years, Rachel agreed to join AGSD-UK Board as a Trustee in 2020.
The journey to get Bronte diagnosed was a long and painful one, as it was for many. Rachel is in contact with many of the McArdle’s parents and she talks to several McArdle mums every day via the internet.
The family has been to Wales on the “Walking with McArdle’s” courses for the last 5 years and say they have met so many amazing people from all over the world, who all have so many stories to tell.
Rachel has become interested in finding a way to support our GSD teens and young adults through diagnosis and on into adulthood. Diagnosis at a young age is obviously an immense advantage, but for many it’s the start of a very difficult journey. Rachel hopes to be able to contribute to the discussion on how we may be able to improve this.