A £30,000 grant from the Lancashire Freemasons has enabled a North Western advisory service for people with Huntington’s Disease to take new referrals and attend to the specific needs of the patients and their families.
The Huntington’s Disease Association advisory service is delivered by experts on the condition and, due to myths and misinformation about HD, aims to demystify the disease and provide practical and emotional support, and will continue to do so thanks to a grant awarded by the Masonic Charitable Foundation.
The foundation is a charity funded by Freemasons across England and Wales, and will help people and families affected by HD by providing advice, support and information on all aspects of the disease.
Referrals to the North West service grew considerably over the last year, with an increase of 115% in Manchester and Cheshire and 57% in Cumbria and Lancashire. This increase is set to continue as recent strides in medical research means there is hope on the horizon for a potential treatment that could slow down or stop the symptoms of Huntington’s.
There are 560 cases of Huntington’s disease in the North West known to the Huntington’s Disease Association, out of 4,502 across England and Wales, although there are as many as four times that number at risk of inheriting the faulty gene that causes HD from a parent.
Additionally, there are 630 family members and other carers for people with HD in the North West who have accessed the Advisory Service, with more than 3,800 nationwide.
Should the potential new treatment for HD become a reality, people would have to be diagnosed to be eligible for treatment. At present, only around 20% of people who are at risk take the predictive genetic test to find out – others prefer to keep living their lives without knowing whether or not they will have to face the devastating disease they have seen their families members die from.
If a treatment became available in the future, more people would come forward for testing and the need for advice and support would consequently increase.
Kevin Poynton from West Lancashire Freemasons said: “We are very pleased to be able to help the Huntington’s Disease Association with their Advisory Service for local families. The Association does amazing work providing practical and emotional support to all those affected by this terrible condition.”
Cath Stanley, Chief Executive of the Huntington’s Disease Association said: “The Huntington’s Disease Association is delighted to receive this generous grant from the Masonic Charitable Foundation towards our Specialist Huntington’s Disease Advisory Service in the North West.
"While the outlook for future generations is brighter thanks to recent strides in Huntington’s research, we need to ensure families get the best care and support possible now,” she added.