A core paid staff is essential to the functioning of AGSD-UK, leading and supporting the work of our many volunteers. We are pleased to introduce them to you.
Neil Bradbury, Chief Executive Officer
Neil Bradbury is AGSD-UKs Chief Executive, tasked with helping the charity to continue to make a massive difference to all people with GSDs and their families and support groups.
Neil has joined AGSD-UK with a track record of growing and developing successful charities. Prior to this he held a number of Chief Executive roles and has experience in government and the wider charitable world. He has sat on the board of a number of large bodies including NHS trusts and community groups.
Outside of work, Neil lives in County Durham with his partner and four children and has little time to indulge in hobbies, however he is trying to learn to play the piano!
Jane Lewthwaite, Specialist Care Advisor (Pompe)
Jane is employed through industry grants to support Pompe patients and families.
Jane has thirty years of experience in the voluntary and social care sectors, which she brings to her work for AGSD-UK, where she is now in her third year. Jane is our Specialist Care Advisor, our Safeguarding Lead and a member of the AGSD-UK Fundraising sub-committee.
Her primary focus is responding to the needs of UK individuals and families affected by Pompe disease (GSD2), but she liaises closely with other staff and volunteers to enable the whole GSD community to benefit from her experience and knowledge.
The Specialist Care Advisor is focused on improving the quality of life of individuals and families.
- Provide counselling and non-medical support to improve the quality of life of patients, families and carers.
- Assist with applications for economic help from social benefits and charitable grants.
- Support access to accurate diagnosis and appropriate treatments.
- Connect individuals to one another to foster peer support.
- Develop informative publications for service users.
- Work with NHS specialist teams to improve care standards for their patients.
- Contribute to improvements in diagnostic pathways.
- Work closely with volunteer groups on projects and publications.
- Support individuals to have a greater voice.
- Contribute to the design and organisation of AGSD-UK events.
Jackie Hensen, Office administrator
Jackie has been involved with AGSD-UK since 2013, initially as the bookkeeper but now she also assists with membership, general admin and conference planning.
She is an associate member of the Institute of Certified Bookkeepers (ICB) which helps to keep her current with bookkeeping requirements and legislation.
Prior to bookkeeping Jackie was an engineer and had 10 years serving with the Royal Navy in various war zones, followed by 10 years at Motorola dealing with emergency services communications equipment.
Outside of work Jackie is a volunteer Girl Guide leader for her local Guide unit and a taxi driver for her two dance-mad daughters.
The Office Administrator reports to the and provides part-time bookkeeping and general office management.
- Maintains the charity books and provides financial reports to the Honorary Treasurer and Charity Director.
- Maintains staff, trustee and volunteer records of training and policy declarations.
- Maintains membership records, collects fees and GiftAid.
- Submits GiftAid applications to HMRC.
- Assists with conference preparations and maintains delegate registrations and logistics.