Advocacy

Your voice is needed to help find the cure for dystonia. Click here to learn about the Dystonia Advocacy Network (DAN).

The U.S. government has significant resources that can be leveraged to advance medical research and improve patient care. Contrary to popular belief, the government does not allocate these resources based on the prevalence of a particular condition or the severity of its health effects. In fact, the key to ensuring that policymakers direct these resources towards dystonia on an annual basis is you. 

Advocacy is the process by which you reach out to your members of Congress to educate them about dystonia and inform them of how they can assist the dystonia community. Your advocacy is what raises awareness of dystonia on Capitol Hill, thus building the critical support necessary to advance federal dystonia research activities and secure the development of improved treatment options.

By identifying yourself as a dystonia advocate, you will act as the dystonia community's liaison to your elected officials. Through organized outreach initiatives, you will work in concert with other advocates to advance the dystonia community's legislative priorities.

If you doubt your participation in the dystonia community's advocacy activities will have much of an impact, consider the following: The Parkinson's disease community shares many things in common with the dystonia community; both conditions are neurological movement disorders and they have similar incidence rates. However, the federal government currently dedicates approximately $250 million a year towards Parkinson's research activities. By contrast, the federal government currently dedicates only about $18 million a year towards dystonia research activities. What accounts for this funding disparity is that many more members of the Parkinson's community have answered the call to become advocates, and their outreach to legislators is coordinated through the Parkinson's Action Network (PAN).

In order to leverage our resources to maximum affect and share the legislative success of organizations like PAN, the diverse groups that represent the dystonia community have come together to form the Dystonia Advocacy Network (DAN). No matter what type of dystonia you have, the DAN ensures that your voice will work in concert with other dystonia advocates on legislative initiatives which benefit all dystonia patients.

It is important to note that you do not need to be an expert on civics or government to be an effective dystonia advocate; you just need your dystonia story. Whether it's reaching out to your elected officials or participating in Dystonia Advocacy Day, we will provide you with all the information and assistance you need.

If you would like to identify yourself as an advocate and engage in advocacy activities, or if you have any questions about advocacy, please contact the DMRF's Grassroots Coordinator, Dane Christiansen, at dchristiansen@dystonia-foundation.org.

Just remember, finding the cure for dystonia doesn't start with a lab or a board room, it starts with you.

Email this page     Print this page