Last week our Trustee, Gary Fegan, was honoured to join delegates from Duchenne patient organisations from more than 40 countries worldwide at the Duchenne Patient Academy in Athens. It was a packed weekend covering everything from ReveraGen’s venture philanthropy model, advanced lobbying techniques within the EU, to studies in the correct sitting positions in wheelchairs.
Gary said “the weekend was full of information, but the real value was the truly global friendships and partnerships that were formed over the weekend.
Hearing stories of the struggle of living with Duchenne in places like Chile, Kenya, Sri Lanka and Pakistan was extremely humbling. Such stories of fundraising for food to feed families that have not been able to leave their home for over 5 years as they don’t possess a wheelchair was difficult to listen to.
But these same stories reinforced that there’s a great deal more to this condition than waiting on research, however promising, and Duchenne isn’t just a local issue but global.
The stark reality of the different standards of care, medicine approval systems and ability to advocate for Duchenne was a powerful lesson.
One of the many actions I took away was looking at how we can re purpose unneeded second-hand medical equipment for those much less fortunate to have any access to it.”
It is only by thinking globally as well as acting locally will we achieve the core objectives of Action Duchenne:
Developing effective treatments for all by funding research, educating clinicians and researchers, supporting clinical trials and campaigning for access.
Building a community by uniting families, educating about Duchenne and raising the profile of the condition to a wider audience.
Striving for a more inclusive society by promoting the importance of human equality, day-to-day acceptance of disability and accessibility for those with Duchenne.
Update on UNITE-DMD project
