DMD is an orphan disease, meaning that pharmaceutical companies do not invest in bringing cures to market because the number of potential users does not make it profitable enough for drug companies.
Rather than accept the diagnosis as hopeless, my friend's parents, Debra and Paul Miller, founded CureDuchenne in order to fund targeted research projects to find a cure.
CureDuchenne has funded several research projects that have gone into human clinical trials and have also been instrumental in helping to fund a transitional research and clinical care unit at UCLA.
Having a clinic that can properly assist people with DMD is crucial. If recommended-care standards were implemented, life span could increase 10 to 15 years. Currently, the best DMD-focused clinic is in Cincinnati. The Millers are amazing people who will not give up, you can read more about CureDuchenne and what they are doing at http://www.cureduchenne.org.
For the last three years I have run in the OC Marathon 5K to raise awareness and money for CureDuchenne.
This year, I organized a team to participate in the CureDuchenne Pick Your Peak challenge, to hike for the boys with DMD who can't. It's the first time I have started from scratch to fundraise and recruited a team to join me in the cause.
It was an amazing adventure! I had a great time, and it's important for people to get out and do something for others rather than just feeling bad about someone's situation.
I was very humbled by the kindness of my friends and family who joined me. My team was awesome and consisted of my friends from school, my mom and sister, my mentor, my tennis coach from Newport Harbor High, my sister's college friends, some of their parents and co-workers at a law firm.
I had never met many of these folks before, but they came out and hiked for CureDuchenne!