Treatments are coming… We can nearly touch them
We’ve previously mentioned in blog posts that Duchenne kills sufferers in their 20s. However, Ricky Tsang born 20 May 1981 managed to beat the odds, by reaching his 35th birthday. In this video, Ricky pleads with Janet Woodcock, FDA Director, to approve the use of Eteplirsen, a drug that can be used to improve the lives of boys with DMD although sadly it is not a cure. Thankfully Eteplirsen has been approved by the FDA. But the money raised from events like The Duchenne Dash that are able to fund research into treatments and drugs like Eteplirsen, that are yet to be approved.
The Duchenne Dash
Tomorrow hundreds of riders of all skill levels, from novice to professional will push their first pedal from Herne Hill, London at 11 am, embarking on the incredible challenge that is The Duchenne Dash. Cycling into the night stopping in Newhaven for 2 hours before departing overnight on the Ferry towards Dieppe and then towards finishing line, The Eiffel Tower, Paris at 4 pm (BST).