Having sons with Duchenne forces us into advocating for services, equipment and optimal health care. In reality, whether we are getting services for our son at school, dealing with insurance companies and doctor’s in trying to get the best care, or meeting with staff and members of congress we are advocating. In 2000 when Parent Project Muscular Dystrophy first organized their advocacy efforts in Washington DC, my family felt it was important to meet with our members of congress. By the time the MD Care act was authorized in 2001, we had gained the full support of our representative and both Senators.
Parent Project Muscular Dystrophy has organized the Duchenne community’s voice to help leverage over $450 million into muscular dystrophy research, with over $200 million of that for Duchenne-specific research. Our collective efforts have also helped to establish standards of care in Duchenne for the first time in history.
After 11 years of advocating in DC, my family still feels that is extremely important to educate members of congress on Duchenne. When I first traveled to Washington to meet with the Health Legislative aides in my representatives and senators offices I was a full time working Mom in my 40s. I had trouble saying some of the terms that were vital in explaining how important NIH support is to a rare disease like Duchenne. I was really nervous! Our training session was given by young smart 20 to 30 year olds. It was during our training session on Sunday when I realized that being versed in the scientific terms and coming off as a Washington expert really wasn’t my role. My role was to educate my representatives on Duchenne and how it affected my family. It was important make sure that these offices knew that this issue was important to someone who lived and voted in their district. I thought “I can do this! It’s just coming up with a brief elevator speech about my son and how Duchenne affects my family.” The other thing that made me feel a little more comfortable would be that each meeting would be with other advocates from my state as well. The group of advocates in each meeting would be able to help each other out.
Through the years the representation has changed for my congressional district with almost every election. Therefore it has been extremely important to make sure that that PPMD’s agenda has been maintained by building relationships with both my congressional representative and their aides in Washington. I have found that I have been successful with a lot of persistence and a little bit of honey. My experience has been to follow up to my meetings in Washington with hand written and email thank you notes to the people I met with during the advocacy conference. Even if a meeting did not go as planned, you can build a lasting relationship by letting the representative know that their staff was helpful and attentive. Periodic updates of PPMD’s agenda and how our sons are doing also help build the relationship with the Legislative Aides and our representatives in Washington.
To quote the late Senator Paul Wellstone who was the one of the original Duchenne champions in Washington: "Politics is not predictions and politics is not observations. Politics is what we do, politics is what we create, by what we work for, by what we hope for and what we dare to imagine." PPMD imagines a world without Duchenne. One of the ways you can help to End Duchenne is to participate in PPMD’s advocacy efforts in Washington. PPMD of course would love to have a person from each state attend the conference. But if you can’t attend, PPMD makes it very easy to participate in a variety of ways. Please visit http://www.parentprojectmd.org/getactive to help achieve a world without Duchenne.
