In order to keep its overheads to a minimum, the CGD Society does not employ any staff directly. Instead it collaborates with Genetic Disorders UK to ensure that the charity is run professionally and at a low cost base.
Claire Jeffries, Operations & Fundraising Manager
Claire has personal family experience of CGD and so has a good understanding of what life is like living with the condition. As Operations and Fundraising Manager, Claire manages all aspects of the charity in liaison with Adelle, our Marketing and Fundraising Officer, Helen, Susan and the board of trustees. Claire is our only full time member of staff.
Claire started working with the charity in January 2018 as our Charity Coordinator and has successfully taken the charity forward in a new positive direction. Claire is the first point of contact for our members and continues to provide advise and support to many families and individuals living with CGD.
Adelle Scott, Marketing & Fundraising Officer
Adelle has over 20 years experience working in fundraising and developing marketing strategies. During Adelle's career she has been responsible for a diverse range of charitable activity from the creation, management & delivery of integrated CRM strategies to devising and driving new fundraising and income streams.
The Marketing & Fundraising Officer is a newly created role in which Adelle will be supporting our Operations and Fundraising Manager, Claire, in coordinating all of our fundraising campaigns and communications. Adelle will be the main point of contact for our fundraisers. Adelle started working with the charity in April 2020.
Helen Braggins, CGD Society Clinical Nurse Specialist
Helen is a Registered Sick Children’s Nurse and a Registered General Nurse, and works full-time as our CGD Clinical Nurse Specialist based at Great Ormond Street Hospital for Children (GOSH) in London.
She has extensive nursing experience in haematology and oncology, child protection, care of children with complex needs, specialist adolescent care and transition to adult services. Helen worked previously at University College Hospital and at St Mary’s NHS Trust where she coordinated a multi-disciplinary nursing team. Helen provides telephone and email support for those affected by CGD throughout the UK. Helen also provides on-site support for CGD patients under the care of GOSH.
Her work includes coordination of clinics for CGD, working with patients undergoing transplant and giving intravenous home therapy. She also offers pre-natal genetic advice and ante-natal support for X-linked CGD female carriers.
Dr Susan Walsh, Technical Director
Susan is the Technical Director at the CGD Society where she has worked since 2002. She has a degree in biochemistry and a PhD. She is a trustee of Genetic Alliance UK and served as a member of the Executive Council of the Association of Medical Research Charities from 2009 – 2015. Susan graduated as a EUPATI Fellow in 2017. Susan works one day per week for the CGD Society developing information for the patients, their families and the medical community. Susan is a member of the Specialised Services Clinical Reference Group for Specialised Immunology and Allergy Services.
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