Trustees’ Week is a time for us to come together to celebrate the achievements of nearly one million trustees across the UK.
Many voices. Working together. With purpose. This year we celebrate the individual talents, viewpoints and experiences each trustee brings to their board and their collective decision-making and how diversity can help make a charity stronger.
- Trustee Week 2023
What made you first want to become a trustee?
"For me, I wanted to give back but didn’t know how. In my day job I worked as part of the pharmaceutical industry and I worked on several rare disease projects and saw the huge unmet need of patients and also got to work with a number of patient groups. The work they were doing to raise awareness and lobby for better healthcare for their rare disease populations was incredible. So I wanted to volunteer and learn more about what I could do to help the patient group efforts."
When did you first put yourself forward to become a trustee and what was the charity?
"This was in Sept 2019 for the Huntingtons disease youth organization (HDYO). I attended my first Huntington’s disease conference in Bucharest which was the European Huntington Association’s conference and I met Astri from European Huntington’s Association and Matt from HDYO as well as Steve who was a trustee for the Huntington’s Disease Association. It was one of the best patient conferences I’ve ever been to and I felt so incredibly welcomed by the Huntington’s community because I was attending on my own. We learnt, we ate we danced and sang a lot. Afterwards, I wanted to get involved further with the Huntingotn’s disease patient groups. Being 30 at the time I reached out to HDYO and got put in touch with BJ who was the current chair of the board and they were looking for more European board members as it’s an international organisation."
Did you have any relationship to Huntington’s disease when you joined the Huntington’s Disease Association?
"No I don’t have a direct connection but had been part of the Huntington’s disease community for four years by the time I joined and had been chair of HDYO for three years. I have made so many friends who are impacted by Huntington’s disease now so I can now say that I do have a personal connection."
Why is being a trustee so rewarding and do you have a highlight from your time with us?
"Definitely the event we had in Parliament in June 2023. The event was an opportunity for parliamentarians to find out about the biggest challenges those living with the condition face, the work of the Huntington's Disease Association and how public services could be improved to ensure those affected live the best lives possible."
In your opinion, what skills and knowledge do you feel you bring to the charity?
"I think I bring a somewhat youthful voice to the organisation in addition to my experience across pharmaceutical companies, health economics, clinical trials and understanding the science with my PhD in molecular biology."
Why is being a trustee so rewarding and do you have a highlight from your time with us?
"I love the team at the Huntington’s Disease Association and Cath Stanley the CEO is incredible I’ve known Cath and Steve one of the other trustees since 2019 and I feel lucky to work alongside her. The highlight would definitely the event we had in Parliament in June 2023. The event was an opportunity for parliamentarians to find out about the biggest challenges those living with the condition face, the work of the Huntington's Disease Association and how public services could be improved to ensure those affected live the best lives possible."
What would you say to someone who was thinking about becoming a trustee?
"Do it. It doesn’t matter what background you have, you don’t need a degree and there are no specific qualifications. You just need to care a lot, want to give back, and have something you can offer, this may be a young person's perspective, you may be a caregiver, a patient, a friend or a professional. You can look on charityjob.co.uk where many charities advertise for volunteer roles as well as paid roles and will list trustee positions on there."
Thank you for the time, commitment and effort you bring to the charity.
If you would like to do more with the charity, you can take a look at different ways to get involved here. If you have any questions or have been thinking about becoming a trustee, please email info@hda.org.uk or call 0151 3315444.
