Organisation for people with Huntington's disease gets cash boost

An advisory service in the North West for people with Huntington's disease can continue to take new referrals thanks to a £30,000 grant from Lancashire Freemasons.

Friday, 17th February 2017, 10:17 am
Updated Wednesday, 1st March 2017, 9:20 am
Kevin Poynton, from Lancashire Freemasons, handing over a certificate to acknowledge a grant of 30,000 to Cath Stanley, chief executive of the Huntingtons Disease Association and her staff

The Huntington’s Disease Association’s specialist advisory service is delivered by experts on the condition and tailored to the individual needs of those with the illness and their families.

The grant has been awarded by the Masonic Charitable Foundation, a charity funded by Freemasons across England and Wales, and will help people and families affected by the condition 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 57 per cent in Lancashire.

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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 the condition in the North West who have accessed the advisory service.

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 per cent of people who are at risk take the predictive genetic test to find out.

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: “We are delighted to receive this generous grant from the Masonic Charitable Foundation towards our specialist 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.”