Duchenne Now is dedicated to finding and funding treatments, trials and eventual cure for ALL those living with Duchenne and Becker MD. Duchenne Now was launched in March 2012, with a fresh new approach to achieving those goals.
The Trustees of the Charity are all parents of children and
young adults with Duchenne, we know how important it is
to progress with viable Intermediate treatments until a
cure can be found. Between the trustees of your charity
there is over 20 years of dedicated Duchenne charity
experience. Members of the board have strong relationships
with many key members of the international Duchenne
community; this includes other charities, clinicians and
researchers around the world.
We are dedicated to treating everyone with Duchenne and
will only fund projects with a clear road map to market
within a reasonable time frame of 0 to 5 years; we urgently
need to start treating this generation of people living with
Duchenne, because tomorrow could be too late.
In our view it is an absolute scandal the only as yet approved treatment for Duchenne is steroids, we are convinced this can be changed and quickly; together we can make viable treatments a reality for all.
Duchenne Now is totally transparent in all we do; we publish regular monthly accounts online and via email to our members for all to see. When research projects are presented the charities members will be invited to vote on which to fund, the Trustees and Scientific Advisory Board [SAB] will make comments, show costs, expected time frames and relevant information except of course anything restricted by non disclosure agreements with our partners.
Duchenne Now Trustees were determined to ensure every single penny donated counted, to this end we work extremely closely with the business community who have been absolutely magnificent in their support. The business community sponsor 100% of the charities overheads "therefore" anyone donating to us today whether they are a business or an individual, can be assured of the fact £1 donated means £1 to research and trials for Duchenne it does not disappear into any general fund never to be seen again. We truly appreciate the time and effort put in by supporters especially in the trying times we now live, every penny must be made to count.
We promise to assist you in your fundraising and awareness activities, Duchenne now likes you to personalise your fundraising materials via our templates on the website for such things as charity boxes, sponsorship forms, posters, press releases etc. We have raised this facility to keep costs to a minimum for our sponsors and giving you the opportunity of taking ownership of your event, this is all about us working as a team, not Duchenne Now dictating or running your events for you!
Duchenne Now is about being open, honest and above all being frank with the community in all we do, this of course can cause some inconvenience at times and the whole world can see what you are doing! We believe the Duchenne community deserves nothing less, for far too long people have not had control and the it's time to change that, we challenge others to follow our lead nothing to hide, nothing to fear.
Your Charity, Your Goal, Your Voice.