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Trustees who served in recent years

We are grateful for the service of past Trustees and are very pleased to acknowledge here those from recent years.

Stuart Alderson

Stuart served as a Trustee from October 2014 to October 2019.

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.

Jane Guy OBE

Jane served as a Trustee and Secretary from October 2017 to October 2019.

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.

Heneage Legge-Bourke

Heneage served as a Trustee and Honorary Treasurer from November 2017 to March 2019.

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.

Allan Muir

Allan served as a Trustee  from 2005 to 2011.

Allan Muir became a trustee upon taking on the role of GSD2 (Pompe) Coordinator in 2005. He had been involved with AGSD-UK since 1991 when his son Jamie was diagnosed with Pompe. He was instrumental in raising substantial funds through sponsored bike rides in exotic locations, and the “Sportive” bike rides in the South Downs. He made large contributions to growing our infuence nationally, internationally and with the pharmaceutical industry. It was largely Allan’s drive that led to the conversion to a limited company, opening an office and employing staff.

Allan’s career was in aerospace engineering. However, when AGSD-UK decided to take a big step towards a more professional organisation and recruit a Development Director, Allan decided to apply for that role and was successful. Becoming an employee in 2011, albeit part-time, meant that Allan had to stand down as a trustee. He served as Development Director, then Charity Director, until 2019.

Allan and his wife Babara live in Hampshire.

Read Allan’s full story in the News section.

Jayesh Pindolia

Jayesh served as a Trustee  from October 2011 to 2022.

Jayesh has been a director of 11 successful companies in the UK and Europe. He brought a wealth of business knowledge to the AGSD-UK and he was one of the longest standing trustees of the charity. He lives in Hertfordshire.

Having two teenage children with GSD1a led Jayesh to dedicate his spare time to raising awareness and funds for the charity. The whole family were often involved in organising and participating in major fund-raising events over the years.

Mike Porter

Mike served as a Trustee from 2012 to 2019, with the latter five years as Chairman. 

Mike has worked in a number of different industry sectors but spent twenty years in the technology and business process outsourcing market, where he became Managing Director of a business with over two thousand staff. He has lived and worked in the UK, Europe, Japan, USA and Canada. In 2009 he set up his own management consultancy business and continues to support a number of small and medium sized companies as well as providing coaching support to senior managers.

With a Masters degree in Business Administration, Mike went to school and university in Lancashire, though he was born and raised in Scotland moving to England when he was seven.

Following a four-year spell living in Denver, Colorado, Mike returned to the UK in 2007 and is now settled in the picturesque Eden Valley in North Cumbria. He is a keen walker and motorcyclist and has been a supporter of Preston North End for 50 years. His eldest two children are married and the youngest is currently reading English at Hull University.

Mike’s wife Amanda was diagnosed with adult-onset Pompe disease (GSD2) in 2011. She commenced treatment with Myozyme and moved to home infusions in 2012.

Rob Seaborne

Rob served as a Trustee from 2018 to 2021. 

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.

In 2021 Rob moved to a research position in Copenhagen and this resulted in the need for him to step down as a trustee.

Other recent past trustees

Other people who have served as Trustees since AGSD-UK was converted to a company limited by guarantee in 2009: