Advocacy
What is advocacy? It’s simply the process by which ordinary citizens band together to make their needs known to their elected representatives. What is our need? A cure for dystonia.
Like other neurological diseases, dystonia is a complex problem that will take major amounts of money and research to solve. The largest single source of money and medical research in the world is the United States federal government. However the amount of money the government has available for medical research is limited. The government has to take this limited amount of funds and allocate it according to perceived needs. The key word here is ‘perceived.’ Even though dystonia is the third most common movement disorder in the United States, it has not come anywhere close to receiving the amount of research funds that the
Like other neurological diseases, dystonia is a complex problem that will take major amounts of money and research to solve. The largest single source of money and medical research in the world is the United States federal government. However the amount of money the government has available for medical research is limited. The government has to take this limited amount of funds and allocate it according to perceived needs. The key word here is ‘perceived.’ Even though dystonia is the third most common movement disorder in the United States, it has not come anywhere close to receiving the amount of research funds that the
Legislative advocacy leads to federal research funding and greater awareness.
numbers would seem to indicate that it should. The solution? Advocacy.
Following the Example of Parkinson’s Disease
Other patient organizations have had similar difficulty in gaining visibility. Parkinson's disease is a good example. Twenty years ago, the powers in Washington DC simply shrugged their shoulders, expressed sympathy, and funded Parkinson's research at a minimum level. Then the Parkinson’s community banded together and created the Parkinson's Action Network (PAN), an advocacy organization whose sole purpose is to press the Congressional establishment to increase medical research funding for their cause.
Today, Parkinson's research is funded to the tune of approximately $250 million per year. (In contrast, dystonia research at the National Institutes of Health is running at approximately 18 million dollars per year.) Congress has also established 12 Parkinson’s research centers around the country. Additionally, the Defense Department funds approximately $25 million per year of Parkinson's research, and the Veterans Administration has established its own chain of six Parkinson's treatment and research centers across the nation. So, what made the difference? The hard work of the Parkinson's Action Network’s advocates.
You might be thinking “There are a lot more people with Parkinson's disease than dystonia. PAN must be a really big organization with thousands of advocates.” Actually no. Currently, PAN has approximately 18,000 members and only around 160 designated volunteer advocates. In contrast, the DMRF has over 30,000 members and around 12 designated volunteer advocates.
The lessons are clear. Advocacy is the key to getting the increases in federal funding that’s so desperately need to find additional treatments and the eventual cure for dystonia.
Following the Example of Parkinson’s Disease
Other patient organizations have had similar difficulty in gaining visibility. Parkinson's disease is a good example. Twenty years ago, the powers in Washington DC simply shrugged their shoulders, expressed sympathy, and funded Parkinson's research at a minimum level. Then the Parkinson’s community banded together and created the Parkinson's Action Network (PAN), an advocacy organization whose sole purpose is to press the Congressional establishment to increase medical research funding for their cause.
Today, Parkinson's research is funded to the tune of approximately $250 million per year. (In contrast, dystonia research at the National Institutes of Health is running at approximately 18 million dollars per year.) Congress has also established 12 Parkinson’s research centers around the country. Additionally, the Defense Department funds approximately $25 million per year of Parkinson's research, and the Veterans Administration has established its own chain of six Parkinson's treatment and research centers across the nation. So, what made the difference? The hard work of the Parkinson's Action Network’s advocates.
You might be thinking “There are a lot more people with Parkinson's disease than dystonia. PAN must be a really big organization with thousands of advocates.” Actually no. Currently, PAN has approximately 18,000 members and only around 160 designated volunteer advocates. In contrast, the DMRF has over 30,000 members and around 12 designated volunteer advocates.
The lessons are clear. Advocacy is the key to getting the increases in federal funding that’s so desperately need to find additional treatments and the eventual cure for dystonia.
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