Community fun event to raise money for local Huntington’s disease research

A group of local people affected by Huntington’s disease are to hold a family fun day at The Two Bridges pub in Saltash this Saturday, 20 August to raise money for research into the disease at Plymouth University.

There will be face painting, a barbecue and live music from 2pm until the pub shuts. There will also be a raffle and auction.

The group ran a similar event at the pub last year and raised £600 – they hope to beat that figure this year.

The event is part of a wider range of activities run by local people affected by Huntington’s disease to raise money to support research into the disease at Plymouth University Peninsula Schools of Medicine and Dentistry (PUPSMD).

The group has set itself a target of £20,000 and has already raised the impressive sum of £8,000. Planned events for later this year include an ‘aerobathon’ (a sponsored keep fit class) and a golf day.

Researchers from PUPSMD are investigating the potential of manipulating activity at a cellular level in order to develop an effective therapy for Huntington’s disease.

The team are analysing a protein called Bim, which causes cell death in various tissues including those of the brain. At present it is unclear how Bim levels and activity increase in Huntington’s disease, and the study will aim to identify the mechanism which allows this increase. By understanding the mechanism and how it works, the way could be open for manipulating it to create an effective therapy for the disease.

Huntington’s disease is an hereditary disorder of the nervous system caused by a faulty gene on chromosome four. The faulty gene leads to nerve damage in the area of the brain resulting in gradual physical, mental and emotional changes. Those born to a parent with Huntington’s disease have a 50:50 chance of developing it, and there is currently no cure.

This Saturday’s event is being organised by Liz Fedrick and a band of friends and family. She said: 

“We did really well at last year’s event and we are hoping to do even better this year, so we hope that lots of people will come. All our local fundraising is as the result of a visit we paid to the labs at PUPSMD to meet the team trying to find a cure for Huntington’s disease. We were impressed by what we saw and decided to support local research – we are fortunate to have a team of scientists on our doorstep who are working to develop a treatment for a disease which has touched us all so deeply.”

“We are immensely grateful to Liz and her family and friends for arranging this family fun day in aid of our research into Huntington’s disease. We are always impressed at the dedication, innovation and success of the local group raising money for us in the area – they are a great example of how a group of people affected by a particular condition can work with their local research teams to help find a solution.”