At the AGM and Community Conference in November, you asked some questions. We have answered them here for you. 

Question one:

Should treatments (any upcoming) become available, but not funded by the NHS, would the Huntington's Disease Association consider funding treatment and lobbying for funded treatments?

Unfortunately, it would not be financially possible for the Huntington’s Disease Association to fund treatments. However, we will lobby decision makers to make the case for people living with Huntington’s disease to access safe and effective treatments.

Question two:

Is there any advancement in preventative exercises to slow onset? Some theories include exercise, stimulation and recreational drugs.

There is evidence that being physically active is associated with a delayed age of the onset of Huntington’s disease and sedentary behaviour (like spending more time watching television) has been linked to an earlier age of onset.

Some examples of papers written about this are below:

Causal associations of physical activity and leisure sedentary behaviours with age at onset of Huntington's disease: A mendelian randomization study

Wang H, Dai Y, Tai Y, Zhou Z, Zhou X, Li B, Yu L. Causal associations of physical activity and leisure sedentary behaviors with age at onset of Huntington's disease: A mendelian randomization study. Parkinsonism Relat Disord. 2024 Oct;127:107080. doi: 10.1016/j.parkreldis.2024.107080. Epub 2024 Jul 30. PMID: 39096550.

We don’t have evidence to recommend specific exercises that can slow onset. But we do have information about activity in Huntington's disease (there are also webinars on the topic)

ENGAGE-HD physical activity workbook version 2 - This workbook is intended to be used to support people with HD to plan regular physical activity with support from a physiotherapist. It includes information on goal setting and resources to help people with Huntington’s disease stay active.

Visit EHDN website 

Physical activity tool for people with Huntington’s disease PAT-HD This tool is to help people with HD to think about what physical activity they could do and then make a plan to increase or maintain their physical activity over time.

Visit EHDN website

There is also a page on the Huntington’s Disease Association website about the Physical Activity Guide.

Question three:

We are concerned that in the two years a family member has been attending HD Enroll, there has been no offer of a trial, treatment or counselling. Family member is a smoker and drinks most days, might this exclude him from these things?

Enroll HD is an observational study, meaning that people are ‘observed’ over time, but they don’t receive interventions (like they would in a drug trial).  Sometimes researchers use the Enroll database if they are looking for people to take part in a drug trial – they would be looking for people who meet the criteria for the specific trial.  For symptom management it is best to speak to your local HD clinic / GP, for psychological support you can also speak to healthcare professionals to learn more about what is available locally.  

We have information about psychological support here:
Huntington's Disease Association - Mental health

Question four:

Can someone with Huntington’s be an organ donor? What is someone at risk of Huntington’s?

Having an illness or medical condition doesn't necessarily prevent a person from becoming an organ or tissue donor. The decision about whether some or all organs or tissue are suitable for transplant is made by medical specialists at the time of donation, taking into account the person’s medical, travel and social history.
More information is available on the organ donation website.

Question five:

If you suddenly had extra income, e.g. £1M. What would you do with it?

If we suddenly had an extra £1 million, we would use it to make sure the support and services people rely on are secure and sustainable for years to come. Every year we need to raise around £2.5 million just to keep our services running, so this funding would allow us to plan ahead and invest in the areas that make the biggest difference to families affected by Huntington’s disease - from specialist support to peer networks and advocacy.

Question six:

Are people from Northern Ireland eligible to be participants in research linked to the Huntington's Disease Association? 

There isn’t research directly ‘linked’ to the us, we do have a set-up where researchers can ask us to share their research – each piece of research will have it’s own criteria so it would be best to see if there is information on there about who can take part, if not make direct contact with the researcher.

Research studies

You can find trials on these websites, which would give the criteria for recruitment:

- HD Trial Finder: Find Huntington’s disease clinical trials in Europe
- National Institute of Health Research (NIHR)

Question seven:

Is there any research in regards to service animals or general pet ownership and Huntington’s disease?

There is some evidence that dog therapy and ownership can improve mood and quality of life in people with neurological conditions, including Huntington’s disease.

Question eight:

Any development in identifying Huntington’s onset?

There are some interesting articles re this below:

New Insights Into Why Huntington’s Disease Has Delayed Onset New Insights Into Why Huntington’s Disease Has Delayed Onset – HDBuzz

 Treasure your exceptions – using outliers to understand Huntington's disease onset and progression – HDBuzz

 Switching it up: variety in the HD gene affects symptom onset – HDBuzz

Question nine:

Is the Huntington's Disease Association working with other research groups that do direct policy research or have direct links with policymakers?

We work closely with other charities (such as the Neurological Alliance) to influence policymakers and work on shared priorities.

Question ten:

Do you think that the latest treatment developments might decrease legacy donation?

There is that risk. It’s really difficult to know the impact that treatment developments will have on the donations we receive. As safe and effective treatments are developed, we’ll be fighting for people living with Huntington’s disease to be able to access them.
Because Huntington’s disease affects each person and family differently, we can’t always predict the challenges our community will face in the years ahead, even with the hopeful advent of better treatments. Legacy gifts help ensure that we’re here for everyone, in whatever way they need us; whether that’s specialist support, peer networks, advice, or advocacy. By leaving a gift in your will, you’re helping us respond to future needs and be there for generations of families affected by Huntington’s disease.

Question eleven:

What is the current position with the Associated British Insurers (ABI)? My daughter has once again been refused life insurance as her father has Huntington's diease. Isn’t this discriminatory? You are more likely to get cancer but this is not a restricted disease.

We know how stressful it can be to apply for life insurance if you are at risk of Huntington’s disease.

There is a voluntary code of practice agreed between the UK government and the Association of British Insurers (ABI) on the role of genetic testing in insurance. This permits companies who have signed up to the Code to take into account the result of a predictive genetic test if the person is applying for life insurance over £500,000 and has had a predictive genetic test for Huntington’s disease. Only in this circumstance do you need to tell the insurance company the result of the test, if they ask.

We do have a link to a financial adviser who has knowledge of HD and often talks to people about insurance – please speak to your local SHDA if you would like their details.  We have a webinar by the Association of British Insurers available

Insurance | Huntington's disease webinar

Question twelve:

Can you look at the wording associated with ‘capacity’? I think there should be a review of levels of capacity at a national level.

We know that a lack of understanding about Huntington’s disease among healthcare professionals creates a risk that people will having an inaccurate mental capacity assessment. That is why later this year we will be publishing guidelines for healthcare professionals that explain how to fairly and accurately assess mental capacity in someone living with Huntington’s disease.

Question thirteen:

Why doesn’t the Attendance Allowance claim form have Huntington’s disease on it? It is on PIP.

Huntington’s disease is not listed on PIP or the attendance allowance form as they both focus on the affect of the disability rather than a diagnosis.