I have two fantastic children, love nothing more than spending time with the people i love, clean eating, fitness, endurance challenges, design, lifestyle and supporting my football and rugby teams.
I work for a breakfast company but my passion and what I’m really trying to do is save my son’s life. He has Duchenne Muscular Dystrophy, a 100% fatal genetic condition with no cure and no treatment… so I founded and am CEO of Harrison’s fund. www.harrisonsfund.org
I’m trying to save the lives of boys with Duchenne by raising enough money to fund promising research, some of which is already happening around the world but is woefully underfunded.
Harrison was diagnosed in January 2011, and I have spent hours and hours researching Duchenne, I’m not a doctor, I don’t have the training but am now more of an expert than 95% of the GP’s out there….and what I really can do is raise a lot of money in the 10 years we have to fix this.
Duchenne is the most common fatal genetic disorder to affect children around the world.
If you’ve got it, you can’t produce dystrophin, a protein you need to build up your muscles and as a result every muscle in the body deteriorates.
Most kids with it die in their late teens or early twenties, are usually in a wheelchair by the age of 12 and It leads to respiratory failure, heart failure, and other debilitating complications
One in 3,500 boys is born with it, and in the UK 2,500 kids has it at the moment. You can have it, no matter where you are or what your ethnic background is. A third of all cases start in the womb, with no warning before the baby is born.
Although we know a lot about how Duchenne is caused, current treatments are pretty limited. Steroids and daily stretching are what most doctors recommend, but they have their drawbacks and don’t prevent debilitating muscle contractures.
In the last 30 years things have moved on leaps and bounds and we’ve learnt so much but there is a long way to go and we have a short period of time.
We need to get as much money as possible into the hands of the world’s best researchers, who are working towards getting the theory off the wet bench and into human clinical trials.
I’m going to raise a £1M this year and am asking foundations, companies and individuals to go on our website and press the big orange button and pledge their support. Any ideas you have about how you can help raise this money or you’re just interested in giving a helping hand please get in touch. firstname.lastname@example.org If nothing else please ‘like’ our facebook page www.facebook.com/HarrisonsFund and share it with your friends.