LA FORCE: Anakin’s fight against DMD
How It All Started
Seven years ago, Anakin was diagnosed with Duchenne muscular dystrophy. Within six months, Marie-Catherine Du Berger, Mireille Roy and friends established the non-profit La Force DMD. In the first year the organization helped families gain access to unapproved new treatment Ataluren for four children in Canada. “One of the things that contributed to this milestone is a powerful web video and media campaign. We were able to generate a web-based campaign gaining lots of views. With limited resources, we managed to reach the cover page of our national newspaper.”
The positive resides in our decision to become actors rather than spectators in this tragedy; it lies in our choosing to act and to have hope. Great scientific advancements are currently being made in the field of genetics: promising research is on the verge of providing new treatment, and more importantly, some researchers need financing so that these new methods of treatments can become a reality. There’s also the fact that specific forms of treatment have been approved elsewhere but are not currently available for our children in Canada. In Canada, the drug approval process is a long and challenging journey ridden with obstacles, during which children like Anakin continue to suffer.
Marie-Catherine Du Berger continues finding the positive side of things after the diagnosis, although she finds it sometimes tough to find the positive side of things when the faith of her son is already determined. “It can annihilate you as a parent. However, this doesn’t take away your right to take action and have hope.”
La Force is a positive way to transform bad news into an effort to create a strong community, because every step taken is essential in the pursuit in finding a cure for DMD. That there, is indeed strength in unity.
There is hope and a lot of work to do … That’s why we need your support. As one parent to another, as one human being to another, we invite you to join our movement.
Thank you to World Duchenne Organization for that presentation text.