Some PD patients know that this disease is going to beat them some day; but, they have a need to fight back. This week there are approximately 200-300 individuals attending the Parkinson’s Action Network’s 12th Annual Forum. About 80% of the attendees are Parkinson’s disease patients. The PD community has a very enthusiastic, well-organized organization advocating on its behalf.
I have had the privilege visiting with many PD patients and their caregivers during the last few days. I asked them about their motives for attending the forum. Why are you meeting with your congressional representatives? Why are you working in your communities to increase Parkinson’s awareness?
"You’re making a personal statement", declared one retired science professor who combats PD. “It also helps you psychologically.” He stated that it helped him get up each day and stay active His answer resonated within the group. “It sends a message to your kids. It shows you that you are fighting.”
“I’m doing this for my two sons.” affirmed Dr. Dave Heydrick, the Parkinson’s Action Network’s Scientific Advisor. Dr. Heydrick is a PD patient and neurologist. He admitted that PD inconveniences his life, and it may shorten it. However, he sees that his efforts may pay off for his sons, or others that he personifies through them. Many of these patients and their caregivers share an ethic that soldiers feel. They fight for the benefit of people that they do not even know.
This group meeting in Washington DC intends to leave a legacy of research and Parkinson’s care that will improve or save lives in the future. Research, discovery and development require millions of dollars. A large portion of research funding comes from the United States Federal Government. The National Institutes of Health directs a large share of this funding. However, another major federal funding source is the Department of Defense (DOD).
Why would the DOD fund Parkinson’s research? The military is interested in preserving brain cells, and the nerve health of its soldiers. Military life subjects soldiers to stress, trauma, and toxins. Funds for that research are channeled through a program called the Neurotoxin Exposure Treatment Research Program or
NETRP.
NETRP funding has to be appropriated each year. So hundreds of PD patients converge on the offices of congressmen and senators each year. They spend a few minutes educating congressional staff about the importance of NETRP to them, as well as the armed forces. The battle that Parkinson’s patients fight every year may someday benefit them. It will likely contribute to advances for future PD patients. However, this unassailable force is also serving soldiers. The irony is healthy – really.
