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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. Two part-time staff are based out of our office, and one full-time staff member works UK-wide from home. We are pleased to introduce them to you.

Allan Muir, Charity Director

Based in AGSD-UK office

Allan was appointed the AGSD-UK’s Development Director in 2010 and subsequently Charity Director in 2016.

Originally an aerospace engineering consultant, Allan became involved in AGSD-UK after his son was diagnosed with Pompe disease (GSD2) at age two. He and his wife, Barbara, benefitted from networking with other families and medical professionals through this small charity. In 2001 Allan became Pompe coordinator and joined the board of the International Pompe Association (IPA). Allan recognises the need for small charities to network and maintains close connections with other neuromuscular and metabolic groups; he is a co-founder of the UK LSD Collaborative.

The approval of Myozyme brought a greater awareness of Pompe. As surviving infants meet previously unattainable milestones, the demands on the charity grow. Allan is working with the  board, staff and volunteers to develop a national service for all GSD families.

Allan took part in the Vietnam Bike Ride 2003, organised the Costa Rica Challenge 2006 and further cycling events attracting up to 300 participants. All were ground breaking, raising substantial funds.

Allan also volunteers as the Pompe coordinator (GSD2).

The Charity Director, accountable to the trustees and members, manages the charity’s day-to-day operations, ensuring that staff and volunteers are focused on achieving its mission and aims.

  • Works closely with the trustees to develop a long term strategy, budget and business plan.
  • Build productive relationships with appropriate stakeholders in order to advance AGSD-UK’s aims and objectives.
  • Establishes and monitors key indicators of AGSD-UK’s impact and financial health.
  • Establishes a mechanism for listening and responding to the views of the beneficiaries on AGSD-UK’s service and performance.
  • Is responsible for AGSD-UK’s administration and financial management, ensuring that it fulfils its legal statutory and regulatory responsibilities.
  • Acts as an ambassador, providing the public face of the charity, representing AGSD-UK at external events.
  • Takes a lead role in developing and implementing fundraising strategies.

Jane Lewthwaite, Specialist Care Advisor (Pompe)

UK-wide from home

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 reports to the AGSD-UK Charity Director and 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

Based in AGSD-UK office

Jackie has been involved with AGSD-UK since 2013, initially as the bookkeeper but now she also assists the Charity Director in the Droxford office 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 AGSD-UK Charity Director 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.