Andrew, 69, is one of the oldest fundraisers to run the London Marathon for the Huntington's Disease Association.
Fundraising is important as it is my way of showing support to Simon and his two daughters whilst honouring Julie’s memory. If what I do makes more people aware of the difficulties faced by those affected by Huntington’s disease, then I feel I have done some good.
Andrew from Lincolnshire ran the London Marathon this year in memory of his late friend of 45 years, Julie. This follows on from his daughter Britt who completed the marathon for the Huntington’s Disease Association in 2025.
For me, it was easy to choose Huntington’s Disease Association as a charity to fundraise for. I want people to be informed about Huntington’s and what it does and I want the families and friends of those impacted by this disease to have support to help them.
He took on this challenge aged 69 years old. This makes him one of the oldest runners to secure a charity place with the Huntington’s Disease Association.
I like to think I am still in my 30’s, but I’m not and consequently the body takes longer to recover. Fortunately for me, the charity was able to secure the services of Andy McGhee [running coach] who has managed our weekly training schedule and worked it around what we are able to do, and I have endeavoured to follow his programme. The support from the Huntington’s Disease Association team has been excellent. There’s a WhatsApp group, monthly mailers and Teams meetings which have enabled us to become acquainted and be advised as to how we should train and what to expect. There is always a wealth of knowledge from the team and they are very responsive.
The impact of Huntington’s disease
Andrew’s friends, Simon and Julie met in school in 1977 and were together until she passed away in 2025.
Their family’s Huntington’s journey started back in 2000 when Julie’s mum, June, was starting to show symptoms before passing away eight years later in hospital after being cared for by her husband. At this point the family had little to no understanding of Huntington’s, the symptoms and what support might have been available to them.
Julie unfortunately went on to develop symptoms in 2016. They were able to utilise the Huntington’s Disease Association for advice and support. They received practical information to help with the Occupational Therapy and Physiotherapy teams as well as helping educate healthcare professionals who would be working with Julie. Simon said:
Diana King [Specialist Adviser] came to see us and was very helpful and honest with us. Our local GP was brilliant but had little experience of Huntington’s and she and Diana spoke which helped her to understand more how to be with Julie when we attended our regular appointments.
Things became really difficult in 2020, made worse by the pandemic. By the end of 2024 it was becoming impossible to care for Julie at home and she was admitted to the Royal Hallamshire Hospital in Sheffield. Diana assisted Simon with legal matters such as a lasting power of attorney and finances. "Diana continued to visit us and was there on the end of a phone or email if we needed to reach out," Simon continues.
Simon and Julie on holiday
A lifelong friendship
Andrew and Simon met at work in the 80s and have been friends ever since. The two couples were very close and shared many family holidays in Europe over the years. Andrew’s family have supported Simon and his family throughout their Huntington’s journey.
I am super proud of Andrew (Webbo). At 69, I don’t know how he does it. I applaud him for the training he has put in which has been pretty extensive and will serve him well on the day. We will be there to cheer him on and will come to the post-marathon party to meet some more of the Huntington’s family.
Whether fundraising or donating, the money raised through events such as the London Marathon funds the work of the specialist advisory service, youth engagement service and helps educate healthcare professionals to provide better care. The money raised by Andrew and other runners provides a lifeline for families like Simon’s. Simon says:
Because Huntington’s disease is not well understood by many people, the help we received from the Huntington’s Disease Association made us feel that we were not on our own. We have recently taken part in a pilot scheme of counselling run by the charity with several other families. This works better as it is specific for Huntington’s families. This has helped us to feel that we are part of a bigger family and not alone.
