Hair raising event to help poorly children

Amanda Lamb SUS-160505-075341001
Amanda Lamb SUS-160505-075341001

People are being asked to don blue wigs or dye their hair to raise money for a charity that supports children who are diagnosed with Duchenne Muscular Dystrophy.

Blue Hair Day takes place on June 26 and encourages people to wear blue wigs to not only raise awareness of the disease but also raise money by asking individuals, schools, businesses and community groups to put on a blue wig or dye your hair blue and undertake some fun fundraising activities of their choice.

It is being supported this year by television presenter Amanda Lamb.

It is being run by the charity Harrison’s Fund.

Harrison’s Fund was set up in 2011 up by Alex and Donna Smith, in response to their son Harrison being diagnosed with Duchenne, a type of muscular dystrophy.

Its aim is to raise money to fund the world’s best researchers, who are working to find a cure for the disease. Duchenne is a fatal neuromuscular condition caused by the lack of a protein called dystrophin which results in progressive muscle weakness.

One in 3,500 boys is born with Duchenne muscular dystrophy in the United Kingdom each year. Their average lifespan is just 20 years and it is 100% fatal.

Harrison’s Fund is different from many other Duchenne charities out there because it focuses on trying to find a cure for the disease rather than on palliative car

The campaign is the brainchild of a group of mums who came up with the idea after learning of the devastating news that their friend’s two sons had Duchenne, a form of muscular dystrophy. Klara and Nick Taussig’s boys, Theo, 4, and Oskar, 2 were diagnosed on 26 June 2014. The disease is 100% fatal.

Alex Smith, Founder of the charity Harrison’s Fund, said: “said: “Last year we raised an incredible £15,000 and were blown away by the support the idea received from everyone. We are hoping to raise over £40,000 in our second year so we can fund a research physiotherapist.

“This post will support and evaluate patients who are on Duchenne clinical trials, helping the researchers to assess the success of potential treatments.

“Whilst 26 June marks the anniversary of the event and is when the majority of the fundraising activities will be held, anyone can host a Blue Hair Day anytime in June so we are looking forward to seeing some hair raising activities from all our supporters near and far.”

All the money raised from the day will go towards Harrison’s Fund, which is named after nine year old Harrison Smith, from Surrey, who was diagnosed with Duchenne Muscular Dystrophy, a fatal genetic condition.

Harrison’s Fund is part of the Global Duchenne Alliance, a group of more than 40 international non-profit organisations dedicated to finding treatments for Duchenne muscular dystrophy. The charities work together to share knowledge.

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