Duchenne Now is an exciting and brand new charity registered number 1146355 dedicated to finding and funding Intermediate treatments and eventual cure for ALL living with Duchenne and Becker MD.
Duchenne Now launched in March 2012, we have an open, new and different approach to achieving our goals.
The Trustees of the Charity are all parents of children LIVING WITH DUCHENNE of varying ages from 7 to 19 they know how important it is to progress with viable treatments as quickly as possible until a cure is found. Between the trustees there is well over 20 years of dedicated Duchenne charity experience. Members of the board have strong relationships with key members of the international Duchenne community which includes charities, clinicians and researchers.
We are dedicated to treating everyone with Duchenne and we will only fund projects with a clear road map to market within a reasonable time frame; we need to quickly find, test and make available Intermediate treatments for all people living with Duchenne today, it is in our view a scandal that the only available treatment at the moment is steroids, this needs to change. We are convinced this can be achieved; together we can make viable intermediate treatments a reality for all.
Duchenne Now works closely with the business community promoting our ethos of where possible 100% of what is donated goes to treat and run trials for those living with Duchenne, from the start we have encouraged business partners to sponsor the running costs of the charity so that our fundraisers, friends and families know every single penny goes to fighting Duchenne. The business community have rallied around so far by sponsoring our office space, phones and Internet also one member of staff. We also have business support for our fundraising materials and this very website. Duchenne Now achieved 100% status last year when we managed to get sponsorship for our last remaining expense of £18 pm to just giving.
Duchenne Now Trustees are determined make the running of your charity totally transparent we feel it is no longer acceptable to expect families and those fundraising for us to hand over hard earned funding and not be sure where it goes or what it goes on, we publish our accounts in an easy to understand way monthly for all to see. Trustees will seek out viable research and trial projects making recommendations to our members who will be invited to vote on which projects to fund, we will show comments costs, expected time frames and any relevant information. All projects must always fit in with our ethos of treating all in the shortest time possible and have a clear road map to market.
We will optimise every single penny donated to us by obtaining where possible services for free or via donation. We appreciate how much effort people put in to raising funds, especially in today’s hard financial climate. The Trustees are totally open minded about any potential treatments or research and who we partner with, our aim is to treat this generation of people living with Duchenne the ability to work with others and think outside the box is in our view a must if we are to achieve our aims, no one deserves to be forgotten or left behind.