News

Frightened Rabbit Man To Take Part In Charity Cycle

• 20th Feb 2014

Grant Hutchison of Frightened Rabbit will join 10 other amateur cyclists in May this year as they set off from Edinburgh towards London. Twelve days later, they will arrive back where they started, having cycled over 1100 miles and taken in each of the five capitals of the UK and Ireland. The reason for this? To raise much-needed funds for the charity Cystinosis Foundation UK, which supports research into treatments for this rare, and so far incurable genetic condition.

The cause is particularly close to the heart of two of the cyclists, Neil Hutchison, whose daughter Morven was born with the condition in 2010, and his brother Grant Hutchison who is her Uncle. Neil is a trustee of the charity and the main organiser of this event.

3 year old Morven Hutchison is a brave and angelic little girl whose sunny disposition hides the nature of a grave illness, a rare genetic condition called Cystinosis which causes impaired growth and kidney problems. At the moment, there is no cure. The symptoms can be treated but only with unpleasant drugs that cause severe side effects and must be administered every few hours, including through the night.

“It’s currently incurable condition and is on medication round the clock which has some very life affecting side conditions.” says Grant Hutchison. Morven keeps relatively well but many are not so lucky with frequent vomiting, excess urination, and the need for stomach tubes. Kidney failure whilst still young is almost inevitable and without improvements in available treatments, the long term prognosis for sufferers of this condition is not good.

However, recent research, partly funded by the charity Cystinosis Foundation UK, which this event is supporting, has discovered new physiological pathways and a deeper understanding of the condition. This in turn could lead to the development of new drug treatments and a better outlook for Morven and her family, as well as other children with this condition worldwide. That’s where the challenge comes in, “As it is such a rare disease, drug companies have no financial interest in funding research to find a cure, so all money is raised privately through the carers and sufferers of Cystinosis” Says Hutchison. Further funding is needed desperately to continue the research and progress drug trials which are tangibly-close to a breakthrough.

Support The Great Big Cycle by donating and following their lead up to the big event:

http://www.justgiving.com/greatbigcycle