We are a community based organisation, and to make this all run smoothly, we've got some good people helping. Allow us to introduce the leadership team:
Chair of the Board of trustees
As the parent of a son with Pompe disease, Allan has been involved with the Pompe Community for over 25 years; managing a national charity that supports Glycogen Storage Diseases for 9 years and is currently vice-chair of the International Pompe Association.
Allan has built his considerable personal network of individuals, patient group representatives, academics, healthcare professionals and companies within the Pompe, Lysosomal disease and GSD communities. He is passionate about involving all members of the community to improve research, healthcare and support.
Allan is a trusted advisor to NHS, industry and academic institutions, always representing the patient perspective when considering proposed research or changes to healthcare standards. Allan often represents IPA at meetings of the European POmpe Consortium (EPOC); a close network of healthcare professionals developing European guidelines for the care, management and treatment of Pompe disease.
"Review of lysosomal storage disorder clinical and homecare services in the UK". SSIEM2019 Poster presentation. Authors: Muir A, Barber S, Collin-Histed T, Gibson A, Lewi D, Mathieson T, Stevens R
Dr Kevin O'Donnell
Kevin has been committed to the Pompe community for over 25 years. He believes that the time is right for the creation of Pompe Support Network to consolidate the gains made in that time and to ensure that the UK Pompe community continues to progress and to share in international developments.
Kevin is a Molecular biologist who is currently studying for a Masters in Counselling at University of Edinburgh. He is a former trustee and Pompe representative of AGSD-UK and was a founder member of the International Pompe Association ( IPA); he remains a valued advisor to the association.
In December 1989 Barbara gave birth to a boy who was found to have poor muscle tone. It took two years to receive the diagnosis of Pompe disease after many desperate and fraught visits to the local paediatric service. Since that time, Barbara has been a compassionate and supportive member of the UK Pompe community; always happy to listen and provide a shoulder to cry on.
Barbara is widely recognised for her frequent fundraising activities in her local village community.
Social Worker and advisor to Pompe Support Network
Wayne is an eighties child, diagnosed with Late Onset Pompe in 2006 after 13 long and frustrating years of investigations. After getting lost in life, he decided nearly 10 years ago to go back into education and graduated as a social worker. His driving force was to help other individuals with physical impairments who also find themselves lost in life and struggling with the social care and healthcare systems. Wayne is very much a people person and loves to get to know everyone and find out about them and their journeys, he's very keen on learning new things and enjoying life to the full, in a positive manner.
Ching Shen (Sam) Tye
Advisor on IOPD support
Sam Tye is the father of Sean who was born in 2007 and diagnosed with Infantile Onset Pompe Disease. Living in Aberdeenshire, Scotland, the family have had a very challenging life, coping with the diagnosis and limited care for rare diseases, and arduous travel to hospital appointments. Despite all their challenges, the family received a grant from Donald Trump to turn their garage into a well-equipped bedroom for Sean and have taken him on many adventures (Sean, not Donald); including Disneyland Paris and even canoe trips!
Sam is passionate about parents being empowered to obtain the very best care and quality of life for Pompe infants, and he will work with the Pompe Support Network to make sure that we don't forget that very important section of our community.