Supporting families living with Huntington’s Disease

living with Huntington's Disease
© Katarzyna Bialasiewicz

Chief Executive of the Huntington’s Disease Association, Cath Stanley, maps out the charities ongoing work to support its community, despite the COVID-19 pandemic

Why is it important to support people with Huntington’s Disease in their everyday life, whilst also championing the needs of the community for the future?

Huntington’s Disease is a devastating illness that causes changes to the brain resulting in a complex mix of symptoms including changes to thinking, feeling eating and speech as well mental health symptoms and profound involuntary movements. It is a rare illness, which often means that professionals supporting families affected have never managed anyone with it before. Our support means we can facilitate them offering quality care to families.

Furthermore, our comprehensive training programme ensuring both families and professionals have increased knowledge about this complex illness. Consent changes to both NHS and Social Services as well as benefits, means we need to ensure Huntington’s Disease care does not get lost in reforms. In addition, we need to ensure that any prospective future treatments are made available to those who are eligible.

Why, for the first time, are developments in Huntington’s Disease research offering a glimmer of hope for a potential treatment?

There are many different approaches to looking for prospective treatments for Huntington’s Disease, using very different scientific approaches. There have been some extremely promising early results that may offer some hope for the future prospects of effective treatment.

What is the significance of the Roche and Ionis’ GENERATION-HD1 and Wave Life Science’s PRECISION-HD trials recently ending?

This is obviously a devastating setback for the community, but the failed trials have also taught us a great deal which will help in current and future trials.

Tell us about Huntington’s Disease Association’s strategy 2018-2022, and the priorities helping to achieve your mission.

We are coming to the end of our five-year strategic plan, goals that were set in 2018 after listening to the priorities that the HD community said were important to them. Despite nearing two years of experiencing a global pandemic, we have managed to achieve those goals. Improved quality and support are key goals for our community, and we have been able to extend the support that we offer by embracing the many digital opportunities that have come out of the pandemic. Using virtual training and enhancing the series of webinars that we offer has enabled us to reach the goal of better understanding and knowledge of the illness.

Our branch and support network are absolutely vital to the goal of greater opportunity for peer support. A working group has been looking at ways we can support these groups better and, in addition, we have offered monthly branch and support group leader meetings to help the groups navigate through the difficulties the pandemic created by effectively stopping the ability for the groups to meet in person.

We have just finished a month-long awareness campaign, in conjunction with the other UK and Ireland Huntington’s charities. This was financed from an external source and enabled us to employ a PR company – the results of which meant we got comprehensive media coverage of families telling their stories of living with Huntington’s Disease. This really helped us reach our goal of improved understanding of Huntington’s Disease by the public. It also enabled us to involve the community in telling the stories they wanted people to hear enabling the charity to champion their needs.

Hope for an effective treatment is at the forefront of the communities’ minds, and our role is to communicate what research is happening, how people can get involved, and research successes and failures.

This enables our community to be best informed about Huntington’s Disease research and is an important way the charity can support Huntington’s research.

What are some of the major challenges that need to be overcome currently, for example, has the COVID-19 pandemic affected Huntington’s research, and being able to provide quality support and care?

Huntington’s research has been affected by COVID-19 as during the lockdowns, research studies were delayed, and visits to sites stopped completely. However, a great deal has still been achieved using digital technology. Therefore, some research may be a little delayed, but overall is still on track. We had to postpone all in-person visits; however, this has enabled us to really develop what we can offer virtually and, in many ways, has enabled us to reach more people.

Contributor Profile

Chief Executive
Huntington’s Disease Association
Phone: +44 (0)151 482 9067
Website: Visit Website


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