An Advisory Service for people affected by Huntington’s disease in the North West is expanding thanks to our £30,000 donation to the Huntington’s Disease Association. The service will help patients and families by providing advice, support and information on all aspects of the condition.
The need for greater support
The service is delivered by experts on the condition and tailored to the individual needs of those affected. There are a lot of myths and misinformation about Huntington’s, and the mission of this service is to demystify the disease and provide practical and emotional support.
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 drug that could slow down or stop the symptoms of Huntington’s.
There are 560 diagnosed cases of the disease in the North West, out of 4,502 in the UK as a whole, although there are as many as four times that number who may have inherited the faulty gene that causes the condition. Additionally, there are 630 family members and other carers in the North West, with more than 2,500 nationwide.
Should the potential new treatment 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 diagnostic 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.
Ensuring families get the best care
West Lancashire Freemason Kevin Poynton, pictured presenting the donation to Huntington’s Disease Association’s staff, 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 HDA 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.”
Find out more
Huntington’s is a degenerative genetic disorder of the central nervous system which usually develops in adulthood, causing a wide range of symptoms.The Huntington’s Disease Association is the only charity in England and Wales dedicated to supporting people affected by the condition.