Kemi spoke to us about why volunteering her time to the charity is so important.

Kemi works as an accountant and has spent her career working in the not-for-profit sector. She is passionate about social justice and currently volunteers for a few organisations. Kemi is on our HD Voice panel and has been joining us in our campaigning efforts and she explains why being involved in the charity is so important to her.

There are improvements that might not be available for my sister-in-law to benefit from, but if I can support the next generation I’ll do what I can.

Can you tell us a little about your relationship with Huntington's disease?

"I had never heard of Huntington’s disease until my sister-in-law was diagnosed with the condition about ten years ago. On reflection, I think that because she wasn’t displaying any symptoms, I didn’t perceive there to be an impact of the diagnosis so I didn’t think to find out what this meant. As the impact of Huntington’s disease became more apparent, I then started to research more. It’s been in the past couple of years and particularly during my fundraising efforts in February where I’ve learned the most.

How has Huntington’s disease impacted your family?

"It’s been devastating to see a loved one change so much and feel so helpless. Our families have made numerous changes to try and ensure that she is as comfortable as possible. It’s also been humbling to receive support from loved ones, whether through donating to the Huntington’s Disease Association or providing advice. Dignity has been an important theme for me; I’m mindful of buying items for her birthday or Christmas that I know she likes, even if she isn’t able to communicate that to me or convey her appreciation."

Can you tell us a bit about your time on HD Voice?

"One of my friends undertook an amazing challenge to raise funds for the Huntington’s Disease Association; running as many 10ks as possible in 24 hours. I thought that if he could do that, I should do something! I looked on the website and found out about HD Voice. I’ve been part of care home assessment panels, helping to determine their suitability to support Huntington’s disease patients, I reviewed documents for pharmaceutical companies and been interviewed by researchers looking into various possible Huntington’s disease interventions."

HD Voice has such a novel yet logical approach, allowing researchers and other stakeholders to ask those with lived experience for advice. There are so many different opportunities yet there’s no pressure to say yes to everything as there’s a group of us available to help, so it’s easy to manage the time commitment.

You joined us campaigning in parliament. Why do you think it's so important for our community to be able to attend and be involved in events like this?

"This was a great day; it was one of my highlights of last year. It was humbling to meet so many people and hear candid life experiences. It ramped up my willingness to do more. It’s vital for the Huntington’s community to have a presence at such events to advocate for change."

There’s so much basic support missing that people might not realise, such as the lack of NICE guidelines, varying experiences with those with Huntington’s disease and their network when interacting with the healthcare system. Citing funding and policy as barriers is one thing, but when face to face hearing someone’s experience is irrefutable, so a seat at these tables is essential.

HDA at parliment

Do you have any other plans to get involved with the charity?

"Yes! I’ll keep putting my hand up for opportunities to get involved as they arise. I’d like to play a part in raising the profile of the work that HD Voice does as well as raise awareness in other countries. The Huntington’s Disease Association can look forward to more random emails from me in the future!"

Why is being involved with the charity so important for you?

"There’s so much to do, especially as there’s currently no cure for Huntington’s disease. There are improvements that might not be available for my sister-in-law to benefit from, but if I can support the next generation I’ll do what I can. Representation matters. As a black female, I feel an obligation to highlight that this condition can affect people who look like me as well as other marginalised groups. Through my research as part of my fundraising this year, I realised that there were many underrepresented communities receiving little to no support. Also people aren’t being diagnosed due to the lack of testing and the stigma associated with the condition. Whilst the decision to test is personal, awareness is essential so as to make informed decisions and be aware of the symptoms."

Have you used any of our charity's services?

"I’ve accessed the specialist advisers and youth engagement services. I’m always incredulous as to how quickly they respond. The teams are always friendly, supportive and reassuring, with a personal touch. It’s a source of comfort to know that such services are available should I need to use them in the future."

What do you wish others knew about Huntington’s disease?

"That decision-making at every level is not straightforward. For example, testing for Huntington’s disease can give certainty, but also create a form of survivor’s guilt if some family members test positive and others negative, not forgetting the stigma attached to the condition."

Thank you to Kemi for her volunteering efforts and for sharing this story.

Interested in volunteering?

There are many different ways that you can volunteer with the charity. From joining our HD Voice panel, taking part in research, volunteering at a branch and support groups or fundraising.

Find out more