Founder's Note

How did this happen?

This is a question I ask myself all the time. One day I was a busy, happy mum, wife, sister, daughter, friend, business woman with not enough hours in the day to do all the things I wanted to do. Then out of the blue and with no prior warning I was told I had a life threatening cancer, one of the truly rare ones, and no-one was able to give me any real information about how my life was going to be from now on. I felt I had lost control, not a feeling I'm particularly comfortable with and I confess to being scared.

An aggravating back ache, which I thought was a slipped disc, was the only symptom. Lots of people get it, I wasn't worried, just annoyed that it was slowing me down. I could never have imagined that I am, in fact, one of just 500 people in the UK with a little known cancer called Chordoma. So rare that my spell check had trouble recognising it. In fact, when I first searched the web six years ago to learn more about it, nothing came up.

Turns out you're unlikely to know anything is wrong until you're quite a bit down the line. Research into the diagnosis and treatment is in the early stages. I'm still getting my head around this and frankly, I free-fall between anger, helplessness and despair much of the time. And then I think NO! I'm not going to let the simple fact that this is a rare cancer mean that it escapes scrutiny. I won't let it slip through the net of anonymity, I'm going to raise its profile so that it can be fought. More research will shed light on this cruel, indiscriminate cancer that hides itself away. And more research will help to fight it and offer real hope to its sufferers. But research costs money and rare diseases struggle to attract funds. Every little helps, be it £5 or £5000.

My Mum was taken by a different cancer at the time that I was diagnosed. Cancer is random and when it hits it's all consuming, as anyone who has ever had it or been involved with it knows. I'm determined to fight back and help others to win this battle. That's why, together with my husband Gerald, I have founded Chordoma UK. To raise funds that will go directly to much needed research, no middle man!

Any help you can give is hugely appreciated, whether through donations, event support or ideas about fund raising events.

I'm determined to do everything possible to beat this and together with your support, I know we can.

Thank you,

Susan Fitz-Gibbon

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