Focus: Fundraising - Me and my charity

Graham Kennedy became involved with Ataxia UK when his two children were diagnosed with Friedreich's Ataxia. He has since organised 12 sponsored bike rides, raising more than £350,000 for the charity

How did you become involved with Ataxia UK? About 15 years ago, when my eldest son was only seven years old, he started to experience health problems. He kept losing his balance, so we had tests done and he was diagnosed with Friedreich's Ataxia. Then we discovered that our daughter, who we had thought was perfectly healthy, also had it.

What was your reaction to the news? It was a complete shock to be told that both my children would be in wheelchairs within five years. Friedreich's Ataxia is like muscular dystrophy in that it means you continually lose control of your body.

It was devastating, and I spent two years in the wilderness. But then I decided that I could either mope or use my skills as a businessman to make money for the charity. I couldn't be a scientist and find a cure, but I could help raise the money needed for research.

What did you do to raise funds? Seeing someone you love deteriorate like that makes you realise how lucky you are, so I decided to organise a charity bike ride. I asked ten friends to try to get another ten friends along.

In the end, there were 120 of us, and we completed a 50-mile journey.

That time we raised £25,000 in total. The Big Bad Bike Ride, as it is now known, has grown every year. At the last one, more than 500 people took part and we did 100km - we are all getting fitter and have better bikes. We raised £60,000.

How does it make you feel to raise so much money? When I first started raising money for Ataxia UK, it desperately needed more funds for research.

That extra funding enabled it to identify the gene that causes Friedreich's Ataxia.

When my wife became pregnant again, she was able to have the baby tested in the womb. As a result, we now have two healthy children, who we wouldn't have risked having if there had been a danger that they might have had the disease too.

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