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For Ben, For All: Fighting to end Duchenne

From Ben's Family:

For Ben, For All: Fighting to end Duchenne. Please dig deep and give what you can.

In December 2009 our lives changed forever when our eldest son, Ben was diagnosed with Duchenne Muscular Dystrophy (DMD); a life limiting, muscle wasting condition which will continue to progress. We had never heard of DMD, there is no family history, proving this could happen to any family. Ben is now nearly 10 years old. He is a cheeky, happy little boy with a wicked sense of humour. He is a wonderful son, big brother and friend. He copes so well with what life has dealt him and we are very proud of him.

About For Ben, For All:
A year ago we established a fund called 'For Ben, For All'. The fund has two main aims:
'For Ben' - Fundraising will support many of Ben's medical needs. As Ben’s condition progresses his needs will change requiring adaptations to be made to his home to make it fully wheelchair accessible. He will also require access to therapies and specialist equipment.
'For All' - At least 10% of all funds raised will be donated towards research into finding treatments for all with Duchenne.

About Duchennne Muscular Dystrophy:
Duchenne Muscular Dystrophy, or DMD, is one of the most common, fatal genetic disorders diagnosed in children around the world. DMD predominantly affects males, and it results in the progressive wasting of muscles throughout the body. About 2,400 people in the UK have Duchenne Muscular Dystrophy. Approximately two thirds of new DMD cases are due to inherited mutations with the remaining one third resulting from spontaneous mutations where there is no family history of the disease. DMD is caused by different mutations in the dystrophin gene that result in DMD patients being unable to produce dystrophin, a protein essential for maintaining healthy muscle function. The absence of dystrophin results over time in the deterioration of muscles and leads to the loss of ambulation, loss of respiratory and cardiac function and ultimately death, typically by the time DMD patients reach their late twenties. There is currently no approved therapy for the treatment of DMD.

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Published on 18 January 2017

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