In the last four-years a small, Surrey based charity has slowly been making an impact in the world of Duchenne.
Formed by Alex Smith in 2012, Harrison’s Fund was set up in response to his then four-year-old son Harrison being diagnosed with Duchenne Muscular Dystrophy, a fatal neuromuscular condition.
“When we first found out about Harrison we were told that there would be no cure and that he would most likely be in wheelchair at 12 and dead by 20. The consultant simply said, take him home, love him and give him a good life. To me, this wasn’t an acceptable answer and I knew the key to changing the landscape of Duchenne would be medical research which was why I started Harrison’s Fund”, said Alex.
The charity’s goal is to get as much money as possible into the hands of the world’s best researchers, who are working to find a cure for Duchenne.
The charity focuses on treatment and invests in research that takes the science out from the lab, and into human clinical trials.
And with 2,500 children and young adults with the disease in the UK and an average lifespan of just 20-years, time is against them. The charity is hopeful that his generation will be the last to die from Duchenne.
The money the charity raises brings the thousands of families out there hope that the future may not be so bleak and a breakthrough could be just around the corner. Harrison’s Fund is making a significant impact on the speed at which it will get to the first successful treatment and eventual cure but so much more still needs to be done.
2016 looks like a big year for the charity with places secured in the sought after cycling challenge, RideLondon. In addition, the annual Blue Hair Day campaign is back in June and encourages people to don blue wigs and raise money for the charity.
For more information please visit www.harrisonsfund.com