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Introducing our staff

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.

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.

Jane is also the GSD2 Coordinator.

Jackie Hensen, Finance Officer

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.