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Introducing our staff

Our AGSD team 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.

Val Buxton, Chief Executive

Val joined the charity following a long career in the health and voluntary sectors. She has a background in nursing, health policy and evidence-based practice and is experienced in developing information and support, influencing service quality and building community engagement.

She is very keen to hear from anyone affected by a GSD so she can understand more about their experiences and make sure their views shape the future of the charity. She would also love to hear from people who might be willing to spare some time to get involved in helping with charity governance, peer support, fundraising or communications.

She can be contacted at

Elizabeth Davenport, Specialist Care Advisor

Elizabeth is available to provide information, support and advocacy to anyone living with or affected by any of the GSDs.  You can contact Elizabeth by emailing

Elizabeth started working in the charity sector in the 1990s, supporting those with complex disabilities and sensory impairments. Her passion has always been to empower people to have the best quality of life and get the most out of their local communities and services.

She has lots of experience of offering specialist non-clinical support to people with a rare metabolic condition through her previous work with Niemann-Pick UK and looks forward to speaking to you all – don’t hesitate to get in touch if there’s anything you need

Zainib Hussain, Benefits Advisor and Community Engagement

Zainib is available to support anyone affected by a GSD who has questions about eligibility for welfare benefits or needs help with an application or appealing a decision.

Zainib can offer support with the full range of benefits, including Employment and Support Allowance, Personal Independence Payment, Disability Living Allowance/Child Disability Payment and  Carer’s Allowance and is keen people contact her as early as possible in the application process.

She can be reached by email at As well as her successful track record in the benefits advice field, Zainib has an extensive background in community development and promoting diversity and inclusion. 

Jackie Henson, Finance Officer

Jackie has been involved with AGSD-UK since 2013 and now supports the financial management and effective administration of the charity, playing an important role in member engagement and communications, including web updates.

She would be pleased to help with any general enquiries or queries about membership and fundraising and can be reached at 

Jackie is a member of the Institute of Certified Bookkeepers which helps her stay current with requirements and legislation. She has a background in engineering, with 10 years serving with the Royal Navy in various war zones, followed by 10 years at Motorola dealing with emergency services communications equipment.

Jane Lewthwaite, AGSD-UK Consultant

Jane has been with AGSD-UK for over five years. During that time she has played a huge role in building the care advisor service as well as developing a range of information, charity partnerships and professional networks.

Jane has recently taken a step back from direct service delivery but AGSD continues to benefit from her significant expertise and knowledge of the condition through her consultancy role with the charity.

Vicki Lucass, Charity Coordinator

Vicki is responsible for organising AGSD-UK meetings and activities, including the online Winter Season. She pulls together the regular Glisten publication and is involved in the development of information resources and web content.

Vicki would appreciate any suggested topics for articles or resources as well as offers of conference presentations and can be contacted by email at 

Vicki also has a degree in sports science and a background in fitness and personal training.