The Trustees of the Executive Council make sure that the HDA is running well and is doing what it was set up to do. This includes ensuring the HDA:
- has the money it needs
- spends its money sensibly, on the activities it was raised for
- follows the law, including preparing reports and accounts to send to the Charity Commission
- doesn’t break the rules in its governing document (its constitution, trust deed or articles)
The Trustees delegate the day-to-day operations to the senior management team.
Trustees use their skills and experience to make sure the charity runs efficiently. But trustees are allowed to get advice from external sources like solicitors or other experts if they need to.
All trustees make decisions about the HDA collectively, working as a team. Decisions don’t usually need to be unanimous – so long as the majority of trustees agree.
Andrew currently works leading fundraising and corporate partnerships for a health charitable foundation, the King’s Fund and previously worked at Macmillan Cancer Support. He grew up caring for his Mother who had HD and experienced many of the challenges and struggles that families and carers affected by the disease face. Having seen first-hand how vitally important the HDA’s work is, Andrew became a member of the HDA Executive Council and is grateful for the opportunity to contribute in this way. Andrew has reported that for him, attending the HDA Youth Conference a few years ago was a life changing experience as it was the first time he had met other families facing similar situations and it was inspiring to see the work the HDA does to help families.
Nick Heath is a Chartered Accountant with over 30 years’ experience in the field of Charities. He has held appointment as Executive member and Treasurer over 20 years during which he has provided financial and technical support to the Association. This has guided the charity through difficult and challenging times and he has always emphasised the need for the clarity and thoroughness when dealing with members and funders. Nick is the Chairman of a City Accounting practice, RPG Crouch Chapman LLP and adviser to a wide range of charitable and non-charitable organisations. Before becoming a Chartered Accountant, he took a Natural Sciences degree from Cambridge and worked as a Journalist for eight years. He was recently presented with the Uffa Fox medal for outstanding contribution to international sailing.
Dr George El-Nimr
A consultant Neuropsychiatrist and a Clinical Lead for Neuropsychiatry and Old Age Psychiatry in North Staffordshire. Dr El-Nimr runs a holistic service for Huntington’s disease (HD). His team looks after pre-symptomatic abnormal gene carriers and HD patients at different clinical settings. Nationally, Dr El-Nimr is an elected Executive Committee member for the Section of Neuropsychiatry at the Royal College of Psychiatrists and represents the section at the Public Educational Committee.
Working with the HDA is quite in keeping with Dr El-Nimr’s interest and expertise in the field of HD. He contributes to the educational and other initiatives within the HDA, supporting its executive team. Dr El-Nimr has completed a number of HD projects that were presented both nationally and internationally (some with Award winning). His HD service won the Improving Experience; Chairman’s Award in 2009. He published his service model jointly with a carer, HD treatment guides for GPs, HD literature for care givers and a DVD that outlines the main clinical and service issues. Dr El-Nimr has also written an on line module on HD with a colleague for the Royal College of Psychiatrists and reviewed HD related papers for the British Medical Journal. Dr El-Nimr is an active member of the European Huntington’s Disease Network (EHDN) and has taken on the Principle Investigator role in international HD research.
Matt became involved with the HDA when they supported him and his family with their personal experience of Huntington’s Disease. For Matt being a member of the Executive Council allows him to give back to the organisation and also help ensure it continues to provide the best service possible for families impacted by HD in England and Wales. Matt’s time is spent both studying and working as Project Co-ordinator for the Huntington’s Disease Youth Organisation (HDYO), a non-profit organisation which provides support to Young People impacted by HD worldwide. Supporting young people is his passion and he tries to bring this to the Executive Council. In his free time he is a keen traveller and enjoys playing games which his family can attest too!
Sandra has a background in Secretarial and PA work and became involved with the Huntington’s Disease Association in 1995 after her father, aged 74, was diagnosed with HD. Experiencing the disease for the first time and becoming aware that she, her sister and their families were at risk in the future, Sandra found the HDA newsletter publications useful in helping them to learn more about the illness. In 1998 Sandra and her sister joined the North Kent Support Group, then became members of the HDA and have been attending the AGM and Family Conference weekend for many years. Since 2006 Sandra has lead the North Kent Support Group. She sends out quarterly newsletters, arranges speakers, organises social events and has, most recently, arranged the Support Group’s first Carers’ meeting. Raising awareness of HD and fundraising is a key priority for Sandra and the Support group and she has completed challenging treks in aid of the HDA in Cuba and the Himalayas raising over £10,000. Sandra feels there is a dire need for improved services for HD sufferers and their families and she is totally committed to this cause.
Dr Liz Howard
Liz was elected onto the executive council of the HDA in 2009 when she also became co-chair of the Medical Advisory Panel overseeing the research projects funded by the HDA. Liz has been a doctor in clinical genetics in Manchester since 1995. Her job has always included work with Huntington’s disease families and her interest in and commitment to working with HD has continued to develop over this time. She now sees at risk and affected family members for genetic counselling and offers presymptomatic genetic testing and diagnosis to those who request it. She also co-runs the weekly Multidisciplinary HD management clinic and monthly Predictive Test follow up clinics. Liz is active in clinical research including Enroll-HD (an observational study), drug trials and physiotherapy projects.
Christine Clarke’s background is in the banking and finance industry and has worked in the Public Sector all of her working career. She is now running a small fashion business. Christine became involved with the HDA in 1993 following her late husband’s diagnosis in 1992 and she and her husband found the Merseyside Support Group meeting a vital life line and during the very difficult times it was often the only ground level support available to them. Christine has been a regular attendee ever since, a committee member for over 20 years, Treasurer and now Chair of the Merseyside Branch. Christine is also an active fundraiser and family advocate striving to help improve the quality of life for HD sufferers and the families of those affected by this dreadful disease.
Professor Hugh Rickards is a Consultant in Neuropsychiatry in Birmingham. He has worked with HD families for over 20 years. He is particularly interested in social, cognitive changes in HD and in clinical trials.