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Our goal is to cure Duchenne Muscular Dystrophy in time to save Harrison's life and the lives of thousands of boys like him.
www.harrisonsfund.org
Mission
Our mission is to direct money into the hands of the researchers who have the very best chance of finding a cure or treatment for Duchenne M Read more...
Our goal is to cure Duchenne Muscular Dystrophy in time to save Harrison's life and the lives of thousands of boys like him.
www.harrisonsfund.org
Mission
Our mission is to direct money into the hands of the researchers who have the very best chance of finding a cure or treatment for Duchenne Muscular Dystrophy. Our goal is to cure DMD before it takes Harrison's life and the lives of thousands of boys like him.
Whilst there are many wonderful charities out there who work so hard at raising funds for Duchenne, the money donated is usually put towards subsidising the tremendous cost of care rather than cure. These organisations provide an incredible service for the young boys suffering from this cruel disease as well as offering assistance to their families. However, if we are to conquer DMD, we need to also look into researching a cure or effective treatment.
Alongside a few organisations, we invest our money in translational research - research that focuses on moving science from the lab into human clinical trials so that finding a cure becomes more real allowing the little boys with DMD to grow into the strong men they are meant to be.
General information
Harrison's Fund is named for our eldest son, a fun loving, outgoing, charming and cheeky little man whom to most people looks completely healthy. Harrison loves getting about and is single minded in his determination to do anything he sets himself to, from cutting Daddy's hair to being a perfect gentleman at Aunty Charlie's wedding. Everyone who meets him comments on his wonderfully engaging character, the winning smile and the devilish twinkle in his eye.
But on the inside, our strong, powerful little boy is struggling. He has been described as 'a unit' but his muscles are deteriorating at an alarming rate. Unless a cure is found for Duchenne Muscular Dystrophy, Harrison will lose the ability to walk at some point in his adolescence and eventually will lose all muscle function in his body. Like all boys with Duchenne he will lose his battle for life in his late teens or early twenties from heart or respiratory failure.
One of the hardest things about a child being inflicted with a fatal, life limiting disease is that you know one day, they won't be the able youngster who deserves to keep up with their friends. Or racing around at home, like Harrison who loves chasing after his younger brother, William who seems to enjoy Harrison's toys even more than his own. Our goal is to stop Duchenne, or at least find a way to slow it down significantly before it has a chance to dim the twinkle in Harrison's eye.
Harrison was diagnosed in January 2011, a day that we will never forget. One blood test had changed everything. We were left numb and led down a path we never dreamt we would ever have to stumble down. Like other parents before us, we had to take those first steps that no one is ever taught to do. Our immediate thoughts, like all parents in this position were for securing the best possible care for Harrison and we are lucky to be close enough to the fabulous teams at Great Ormond Street Hospital.
We have also now turned those dreaded first steps into strides of positive action with the creation of Harrison's Fund which was incorporated in September 2011. Having sought out and spoken to some of the best organisations fighting for Duchenne boys worldwide it is clear that for the very first time there may actually be a chance of a major breakthrough. Over the past few years, scientists have made giant leaps forward in gene therapy and molecular medicine and pharmaceutical companies have begun investing in research that may well bring DMD therapies to market. Lobbying is taking place all the time and more government funding is being secured.
We need your help and assistance to take advantage of this momentum.
Together we can 'make time'
With sincerest thanks and gratitude,
Alex and Donna Smith
Harrison's Mummy and Daddy