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.
Stuart joined ICL as a trainee computer operator in a large systems environment. Subsequently he held management positions in systems support, technical services, data communications, development, manufacturing and marketing.
He has over 40 years experience working in senior management positions in both government and private sectors, with extensive history in delivering major projects and programmes for blue chip clients. Stuart has also been involved in a number of start-up businesses as both an executive and non executive director.
Stuart is a keen Reading football team supporter, is married to Sally, has two grown up daughters and four grandchildren.
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.
Jane Guy OBE
Jane lives in Lincolnshire and brings to AGSD-UK much experience in governance. She is an experienced chair having previously chaired Plymouth CAB and a Norfolk CAB, the Southern Water Trust Fund, Money Advice Plus Services in Eastbourne, Plymouth Mind and South West Water’s Freshstart grant scheme. Jane also spent several years managing Plymouth CAB with a staff of 60.
Jane’s career began as a Hansard Secretary then for 10 years in a solicitor’s office and later a money adviser working in a busy Social Services department. She helped set up the IMA and worked there for 20 years, was the Secretary (voluntarily) to the Money Advice Liaison Group for 18 years organising their annual conferences and has worked for Payplan, SSAFA, and as a freelance assessor for BBC Children In Need, being seconded to the Big Lottery in their first year.
She was the vice chair of AgeUK in Plymouth and of Plymouth Guild, a provider of health based advice services. Jane was awarded the OBE by the Queen in 2012 for her work helping young unemployed people back into work.
Jane has been a foster mother to 28 children and has 5 children, 2 step children, 16 grandchildren and 3 great grandchildren.
Nick Jones, Interim Chairman
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.
Heneage Legge-Bourke, Hon. Treasurer
A British citizen aged 70 and educated at Eton College, L’Université de Paris, Ecole Hôtelière Lausanne and London Business School, Heneage spent the first five years of his career in the hotel business. He then joined the London Merchant Bank Kleinwort Benson Ltd and was posted to Brazil for seven years as Group Representative.
After returning to London he subsequently joined Orkem, a French government chemical company as Treasurer. Orkem was then merged into Elf, the French national oil company, where he led the financing team. He was later seconded as Finance Director to Interconnector UK, a gas pipeline project from Norfolk to Belgium. After two years he returned to Paris and joined the French investment bank Natixis where he was a director in the corporate finance department. After ten years he retired and returned to the UK where he joined the Citizens Advice Bureau in Diss, Norfolk as Honorary Treasurer.
Relocating in 2017 to Oxfordshire Heneage joined AGSD-UK also as Honorary Treasurer in order to continue charity work, placing his experience at the disposal of the board so as to ensure prudent management of the charity’s finances.
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 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.