On the way to the airport after the PAN forum ended, I asked the driver to swing by the FDR Memorial. The great man sitting in a wheel chair is the first thing you see, an instant reminder of his status in life. His
eloquent words have new meaning seen through the prism of disability. With the heart, soul, and mind of someone disabled too young by disease, he was dedicated to finding a cure. He knew the power generated when hope marries action. FDR was one of us.

In the case of finding a cure for polio, Leon Trotter, in the June 99 issue of AWARE wrote: “(FDR) probably reduced the time needed to find a cure by 20 years because of the persistence and by the sheer force of his personality. I imagine that a cure would have eventually been found for polio, without FDR's help, but there would have been thousands of additional children and adults infected before the cure was discovered. FDR should be every polio survivor's hero,.”

Mike Fox and Joan Samuelson are our heroes. We are lucky to have the power of, and incalculable benefit
from, their celebrity, connections and sheer hard work. They have taken action to close the gap between funding and cure. Their drive to motivate the congress to fund Parkinson’s Disease research, their innovative thinking on ways to accelerate the science, and their recruitment of a cadre of grassroots advocates have produced results. Researchers are convinced they can cure PD if the Parkinson’s Disease Research Agenda isfully funded. Joan and Mike created hope for every person with Parkinson’s Disease because they acted.

Joan and Mike understand the importance of hope and the necessity of action. On May 22 Mike emphasized in testimony before the senate appropriations sub committee that every person newly diagnosed with PD is now given the gift of hope. In her testimony, Joan decried the fact that the research moves too slowly because of our government’s inattention saying, “…the only way to go on living is to keep our spirits alive, which requires hope - the food on which the spirit feeds.”

Polio research languished without a rallying point or a base of organized activism; it is now playing catch up with the emergence of Post Polio Syndrome. Parkinson’s Disease will not suffer the same fate. Joan and
Mike have motivated hundreds to action, empowered with hope and their example of informed advocacy. Organized, knowledgeable, and politically savvy, PD advocates are dedicating their lives to making the cure a reality by working to secure funding for research and designing systems to accelerate clinical trials and FDA approval of new therapies. After a cure is found, tangential research leading to etiology identification, disease prevention, and quality of life will not be dismantled due to apathy or lack of vigilance.

Meanwhile, the government remains passively hopeful, stating in the form of Dr. Audrey Penn, interim NINDS director, that a cure for PD will “ultimately” be found. But there is no commitment to fully fund the PDRA, and “ultimately” may be too late for many. As Joan said, “It is not the fault of science. It is a failure of government to act,” and “by government choice, we are meandering to a cure.”

The people who run the NIH, those who decide what gets funded, which promising science will be promoted, who will live or die, should take time to visit the FDR Memorial for an infusion of what is possible. As FDR said, "The only limit to our realization of tomorrow will be our doubts of today. Let us move forward with strong active faith." The scientists say we have hope. Action is required for success.

Now.

Carey Christensen