Parents to boys with fatal genetic condition to cycle 1000 miles to help find a cure for their sons

Action Duchenne logoLeo Devlin has Duchenne Muscular Dystrophy, the biggest childhood genetic killer.  His father John, along with other parents of boys with this fatal and incurable condition, will cycle the length of Britain to help find cure for their sons. By riding from Lands End to John O’Groats these parents are hoping to raise £75,000 for Action Duchenne, the national charity dedicated to finding a cure for Duchenne and improving the lives of those with the condition.

There are no treatments currently available in the UK. Leo is 3 years old and is losing muscle strength every day. It is imperative treatments are developed as soon as possible to halt his deterioration and offer hope to families affected by this condition. For this to happen however, more research and clinical trials need to be conducted in the UK. The money raised will be used to help equip the UK with the manpower and expertise to run more clinical trials, giving boys with Duchenne across the UK access to innovative and emerging treatments. These efforts have received the support of both leading clinical experts and major pharmaceutical companies.

Dr Aidan Gill, Medical Director of PTC Therapeutics said: “the provision of enhanced clinical trial infrastructure will develop the possibilities for research across the UK for the direct benefit of patients. We are happy to support Action Duchenne’s campaign to accelerate and coordinate research into this devastating condition”

Leo’s father John spoke of their experiences, outlining how this ride will help his boy.

“Leo is a lively, funny and loving boy who does not yet know the difficulties he will face.  He enjoys kicking a ball, dancing to music, chasing bubbles in the garden and climbing on everything.  He has started to become aware that he is different but how do you explain to a three year old that he will slowly be unable to do the things he loves?  By cycling in a team for 1000 miles, we hope to be able to keep Leo walking, dancing, climbing and kicking for many years to come.”

The riders will be pushing off on the 26th July and hoping to complete their marathon journey 10 days later on the 4th August. Paul Lenihan MBE, the CEO of Action Duchenne is taking part in the event. He said:

“This is the biggest fundraising event that Action Duchenne has ever done. We’ve been blown away by the dedication and support of families like the Devlin’s. Every penny raised will go towards helping boys like Leo across the UK.’

Established in 2001 Action Duchenne aims to support and promote innovative research into a cure and effective medicines for Duchenne/Becker Muscular Dystrophy. The charity, which is led by Duchenne families, aims to: pump-prime innovative research; promote awareness of the condition; to improve care services, and provide access to a range of educational and support/development programmes for people living with Duchenne at every stage of the condition. Action Duchenne has funded over £4.5 million pounds of research since 2001 and several of the projects it has funded are now the subject of late stage clinical trials. Find out more at www.actionduchenne.org

Be the first to comment on "Parents to boys with fatal genetic condition to cycle 1000 miles to help find a cure for their sons"

Leave a comment

Your email address will not be published.


*