PND Association to lobby with Parkinsons Action Network
On behalf of the PND association, I am planning to attend the Parkinson's Action Network's (PAN) Research & Public Policy Forum which will be held in Washington, D.C from 02/25/2013 through 02/27/2013.
PAN is the unified voice of the Parkinson's community advocating for better treatments and a cure. PAN partners with other Parkinson's organizations, and using its powerful grassroots network, it educates the public and government leaders on better policies for research and improved quality of life for people living with the disease. For more information about PAN and to view the forum agenda, please visit www.parkinsonsaction.org.
I have attended the PAN forum on behalf of PND since 2007. Special thanks go to LaRee Ahlers, a TH parent from Nebraska, who in 2007 got us three fully paid scholarships to attend the event.
Our goal for attending the forum is to use this event as a perfect opportunity to learn about the latest treatment options for Parkinson's disease (PD) that may potentially benefit our children, to introduce our population to PAN, and also to the researchers, government agency leaders, and policy makers in Capitol Hill.
The first two days of the forum involve conversations with researchers providing updates on the latest advancements in Parkinson's research and training sessions to hone the participants' lobbying skills.
Since Parkinson's disease and all of the diseases represented by PND share disruption in the dopamine pathway, it is crucial for us to pay close attention to what is happening in Parkinson's research. A great example is the AADC gene therapy trial which was first done on Parkinson's patients, and now a clinical protocol is being developed on behalf of AADC children.
The third day of the forum is the highlight of the event. The participants are divided into teams according to their states, and they get a chance to visit Capitol Hill to meet with their local House of Representatives and Senators.
The young Parkinson's patients and their families face some of the same challenges that the PND families face, and they never grow tired of listening to our children's' struggles and triumphs.
It has been my tremendous pleasure to have attended this forum in the past, and I am eagerly looking forward to attending it next year.