Trustees
Valerie Brisse-Uhlig, Chair of Trustees
I have been personally involved in the management of a primary immune deficiency disorder since 2015. I look forward to supporting Immunodeficiency UK with my experience and skills of over twenty years in pharmaceutical marketing and communication. I have worked in the human and veterinary pharmaceutical industries and in the medical device industry since 1998. Initially in corporate roles, I then started providing freelance pharmaceutical marketing services in 2011. As part of my career journey, I have developed a special interest in health literacy over the past few years. I am passionate about simple patient communication to help improve health outcomes and make a positive impact on patients’ lives. This has led me to support Primary Immunodeficiency UK (now Immunodeficiency UK) as a volunteer since late 2020 with some of their newsletter content. In addition to my pharmaceutical marketing activities, I am also a qualified professional translator, English into French. I enjoy combining my commercial and linguistic expertise to help organisations understand French-speaking markets and communicate with their partners and customers. I live in Berkshire and when I am not working, volunteering or progressing my professional development, I enjoy spending time with my husband and my two children, cooking, baking, cake decorating and keeping fit, lately with mountain biking. I also have two cute house bunnies that keep me busy!
Tom Taylor
I’m really looking forward to supporting Immunodeficiency UK as a new Trustee and providing my skills to support the charity.
As a primary immunodeficiency (PID) patient I am very familiar with the challenges that diagnosis and management of an immunodeficiency bring on patients, carers and families.
I have worked in both the NHS and in the pharmaceutical industry specifically supporting the delivery of cell and gene therapies for cancer, primary immunodeficiency and haemoglobinopathy patients. I have a passion for supporting the delivery of innovative medicines and building and supporting the governance structures necessary for successful treatment. I hope I can transfer this passion to supporting Immunodeficiency UK development and growth over the next few years.
I live in London with my wife and daughter where I am supported by the great team at the Royal Free Hospital having been originally diagnosed and looked after at the John Radcliffe in Oxford.
Diane Hammond
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.
Annette Toft
As a CVID patient myself, I am delighted to serve as a trustee of Immunodeficiency UK.
Before 2020, I did not fully appreciate the absolutely crucial role plaid by patient charities. Now I do! During the pandemic, I came to depend on Immunodeficiency UK for support, especially timely and reliable information that was relevant to me specifically as a severely immunocompromised patient. That support was a lifeline, and I am eternally grateful for it.
I now hope I can use my experience and skills in governance, strategy and organisational development to help develop and strengthen the capacity and capabilities of IDUK still further. I have a social science background, and I worked for almost two decades in the House of Commons, advising MPs on procedure, policy, legislation and delivery as well as liaising with every part of government. I now work as a consultant and executive coach, helping clients with strategy, leadership and change.
I live with my partner in the North Cotswolds which provides a wonderful backdrop to daily walks and other outdoor pursuits. I generally love a good workout – especially with musical accompaniment!
Clare Brailsford
My daughter was diagnosed with Common Variable Immunodeficiency when she was 7 years old and began subcutaneous immunoglobulin replacement therapy a year later. Once she had transitioned from GOSH to adult services at the Royal Free Hospital as a 17-year-old, she moved to IV infusions, having relied upon rapid push infusions during an extended period of travelling overseas. Although we were aware of Immunodeficiency UK before COVID, it was whilst shielding during the pandemic that we really engaged with the charity and appreciated the advice and support it offered.
I am a retired librarian with many years of experience in the retrieval and dissemination of information, and it is that experience together with the experience of caring for an immunodeficient child that I hope to bring to Immunodeficiency UK. As well as being a trustee, I volunteer at my local library and am also a governor at a primary school near my home in St Albans.
Jane Shepard
I have been involved with the immune deficiency area for the past 20 years, working both in the UK and internationally for several immunoglobulin producers: Baxter, BPL and LFB – heading up the latter in the UK until the end of 2021. My experience over this period ranges from the launch of the first subcutaneous immunoglobulin and early home therapy programmes to negotiating and managing supply for UK patients. The community has always held a special place in my heart – more particularly as close family members were amongst those treated in the early days of the Oxford centre, and I am pleased to be now in a position to act as a trustee for Immunodeficiency UK. I have recently moved back to my old university city of Bristol after a 10-year absence, and am enjoying reconnecting with life here.
Staff
Immunodeficiency UK is run by a small team of two staff (equivalent to 1.4 full time equivalents ) and wonderful volunteers. Dr Susan Walsh, who is the CEO previously led Immunodeficiency UK’s predecessor organisation PID UK.
Dr Susan Walsh, CEO, Immunodeficiency UK
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.
Fay Fagon, Digital Communications, Marketing and Fundraising Assistant, Immunodeficiency UK
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.
