Specialist Huntington's Adviser with Huntington's family
Charities often support the most marginalised and vulnerable people in society. Currently, we are at the frontline of dealing with the COVID-19 crisis across the UK but we need continued support and assurances from the UK government that our work will continue through the pandemic.

The Huntington’s Disease Association is a national charity supporting people affected by Huntington’s disease across England and Wales. Huntington’s a fatal neurological disorder akin to simultaneously experiencing Parkinson’s, Alzheimer’s, Motor Neurone Disease & psychosis. There are currently 8000 people in the UK living with Huntington’s disease with a further 32000 at risk of inheriting the disease.

The need for our charity has never been more important. Many people with Huntington’s struggle to adapt to change and can become aggressive as a result. In the last 72 hours, we intervened in a situation where a husband with Huntington’s became violent towards his wife and young son because his wife tried to stop him from going out in respect of UK government guidelines on social-distancing. The cognitive impairment this man faces means he cannot understand the new social distancing and self-isolation guidelines. With help from the Huntington’s Disease Association, his wife and young son were able to enter a shelter; we also facilitated social support and a mental health assessment to keep the husband safe at home. Sadly, this is not an isolated incident. We are receiving similar cries for help daily.

Cath Stanley – Huntington’s Disease Association Chief Executive

Cath Stanley, Chief Executive said:

“Like many charities, we are facing unprecedented demand for our services, at a time when our income has dropped significantly. Without support from the government, we will no longer be able to carry on supporting those very vulnerable families affected by Huntington’s disease.”

Huntington’s disease does not take a break, no matter what, and neither do we! The pressures of COVID-19 are being felt through every aspect of the Huntington’s community. We are calling the Government to provide substantial financial assistance to charities like ours during this scary, confusing and difficult time.

A Service user said:

“Other professionals do not understand the nature of Huntington’s disease.

“It has made me feel much less worried knowing the Huntington’s Disease Advisor is at the end of the phone or there to answer an email when things get tough as often do with Huntington’s disease. All the emotions you go through as a whole family mean that having that support is so important to me and my whole family. I’m not sure what I would do without it.”

Despite the continued efforts of many national charities, we remain unconvinced that the UK Government, and in particular the Treasury, recognise the importance of our work. Under the campaign banner, #EveryDayCounts, the Huntington’s Disease Association alongside the DSC, NCVO and many other charitable organisations are calling the government into action.

We need you to spread the word and help charities large and small from going bust, being forced to cut services or furlough key staff – leaving thousands of people without critical, often life-saving help. Please help #SaveOurSector today.