/LSP Community Interview – Cath Stanley from the HDA

/Community News

Date: 11th October 2018

LSP Community Interview – Cath Stanley from the HDA

In our latest Community interview, we spent five minutes with Cath Stanley, Chief Executive of the Huntington's Disease Association, to learn more about both the condition and the amazing work the HDA do.

With over thirty years behind them, iC1’s the Huntington’s Disease Association have been a huge part of the LSP Community since 2011. We recently sat down with Cath to reflect a little on their time here and on the incredible work the HDA team do.

Hi Cath, thank you for sitting down with us. To get started, could you tell us a little about the HDA and your mission please?

The HDA is a charity that exists to support people affected by Huntington’s disease. Our mission is to enable everyone affected by Huntington’s disease to live life to their full potential by:

• Improving care and support
• Educating families and the professionals who work wit them
• Championing the needs of the Huntington’s community and influencing decision makers

Wow, that is amazing! What is your role for the HDA and how long have you been involved in the organisation?

My role in the Organisation is Chief Executive. I have been with the HDA for 22 years, although not always in this role.

I know this must be an impossible questions but what is the most rewarding thing you have done whilst working for the HDA?

It is hard to pick out one thing as every day is rewarding as the families that we work with are an inspiration, but one of the most rewarding things is our weekend away for families affected by juvenile Huntington’s, a very rare but devastating form of the illness. Seeing these children, who are terminally ill, achieve amazing things and watching their parents loving the memories that are being created is immeasurably rewarding.








That must be so rewarding. What plans do the HDA have for the remainder of 2018?

This weekend is the highlight of our calendar as it is our big weekend family conference, which is a mixture of educational talks, practical tips, and having lots of fun. In November, we have a three day course for professionals working with people with Huntington’s. We are just finalising a project that will launch early next year that will see an accreditation scheme for nursing homes caring for people with Huntington’s – so lots going on!

It sounds like you’ll have a very busy couple of months! How did the HDA come to be based in Liverpool?

We moved from London about 10 years ago after a scoping exercise looking at whether the charity would lose kudos moving out of London, and the economic benefits of moving to three different cities – of course Liverpool won hands down!

And we’re very pleased to hear it did! Now something completely off piste, what is the one you think everyone should do at least once in their lives?

See the Northern lights! It is a surreal experience!

That’s one for my bucket list then! If you weren’t working for the HDA what would you be doing?

I would probably either be a teacher or set up my own business making cards, which is my hobby.

You’ll be making some of the Park’s branding experts very nervous there! What do you enjoy most about being based in this part of Liverpool?

I love the buzz and energy from the students, and I love watching the graduations – all the hard work and pride!

Absolutely, it’s one of our favourite times of the year as well! Finally, wow can people based here learn more about the HDA and get involved in future fundraising activities?

Come and talk to us! Join in the cycle-athon or go to our website!

Thank you Cath, that was brilliant!
Huntington’s Disease is a degenerative disease, caused by a faulty gene in a person’s DNA, which can inhibit movement, learning, thinking and the emotions of a sufferer. We’ve teamed up with the HDA for a charity cycle-athon from the Park to Lapland hoping to raise money for this amazing charity and to help them fight this devastating illness. If you’d like to get involved in the 9-week project then just give a shout to the member of the LSP team and ask how! Thank you again to Cath and the whole HDA team for their time.