IMMUNODEFICIENCY UK - Key Persons
My daughter Rachel was diagnosed aged 7 with specific antibody deficiency (IgG2 and IgA) at Great Ormond Street Hospital , who treated her with IV immunoglobulin. She was one of the first patients on the UK trial of SubGam, the subcutaneous home infusion, which she is still on 20 years later. I was diagnosed with IgA deficiency a few years after Rachel, and we are both now under the Royal Free's immunology team. With the Primary Immunodeficiency Association which pre-dated PID UK, the two of us took part in various PR initiatives to represent the patient view, such as talking to the media; I even spent an hour on the Fourth Plinth Trafalgar Square in 2009 to talk about primary immunodeficiencies! I am semi-retired, have a background in PR and marketing, and am keen to contribute to the growth of Immunodeficiency UK and help support others with immunodeficiencies. I live in Sussex with my husband and two dogs and run regularly, which has helped me combat the effects of my health condition.
Susan is the CEO of Immunodeficiency UK, having led the development of PID UK since its inception in 2013. Susan has a degree in biochemistry and a PhD. She is an ex-trustee of the Association of Medical Research Charities, the XLP-Research Trust and Genetic Alliance UK. She graduated as a EUPATI Fellow in 2017 and is a patient advocate on the National Plasma Product Expert Advisory Group, NHS Scotland.
Job Titles:
- Digital Communications, Marketing and Fundraising Assistant
Fay has seven years' experience in Marketing and Communications for charities and the public sector and is currently completing a degree in Marketing. She is passionate about increasing fundraised income to allow charities to provide more expansive services to the people they support. Fay has experience across a wide variety of digital marketing and communications activity and has previously worked at the youth cancer charity Teenage Cancer Trust and older person's charity MHA.
Job Titles:
- FRPCath FHEA. Chair of Trustees
I trained in medicine in London and encountered my first PID patient, a CGD patient, in the year I qualified. That early experience stayed with me and inspired me to become an immunologist involved in the long-term medical care of patients with immune disorders. I became involved with the PiA (Primary Immunodeficiency Association) 15 years ago and soon realised how essential patient support organisations and charities are for patients and their families living with chronic disorders. I was proud to be able to support PID UK as the Chair of the Medical advisory panel since its inception in 2012 and pleased to be able to help Immunodeficiency UK establish itself as an independent charity for patients with primary and secondary immune disorders. I am honoured to be a founding trustee and the Chair of Immunodeficiency UK and look forward to seeing the organisation grow and develop a patient led trustee base. When I am not working I live in the Chilterns with my family and enjoy walking the countryside with my dog.