News and events

09/08/13

New Initiative Launches to Organize the UK Chordoma Community.... Here`s what the Chordoma Foundation (US) say about our relationship with them...

The UK chordoma community has a new opportunity to accelerate the search for a cure for chordoma through an initiative called Chordoma UK. Founded and led by chordoma survivor Susan Fitz-Gibbon and her husband Gerald, Chordoma UK is a fund that raises money to support groundbreaking research in the lab of Prof. Adrienne Flanagan at the University College London (UCL) Cancer Institute. The fund is incorporated into the UCL Cancer Institute Research Trust, a UK registered charity.

Prof. Flanagan is one of the world’s preeminent chordoma researchers, and a member of the Chordoma Foundation’s scientific advisory board. She has made several landmark discoveries in the field of chordoma research, including the discovery last year of a genetic variant that greatly increases one’s risk of developing chordoma. Now, Prof. Flanagan is building on her discoveries about the biology of chordoma to attempt to identify drugs that could effectively treat it. To do so, she needs £350,000 over the next three years.

Enter Chordoma UK, through which Susan and Gerald are organizing the UK chordoma community to reach this target. They and their supporters have already initiated a range of fundraising activities and now are turning to the rest of the UK chordoma community to follow suit.  While the Chordoma Foundation, which funds and coordinates high-impact research across the world (including  Prof. Flanagan’s) is independent of Chordoma UK, the Foundation strongly supports its mission to provide much needed funding for chordoma research at UCL.

To learn more about Chordoma UK and the work they are supporting visit www.chordoma-uk.org.


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There is little funding available for research into this relentless bone cancer mainly because it is relatively rare, occurring in only 1 in 800,000 of the population. Without a focused approach to raising money for research into chordoma, little will change quickly.

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