I have had the good fortune of attending three Parkinson’s Action Network (PAN) Forums in Washington, D.C.and find myself coming back to Texas with renewed energy for advocating on the local and state level.
This last forum was a bit different for us because of the invitation by PAN to 30 Parkinson’s Disease-related
researchers that were able to share their latest research projects with the advocates in attendance. It was a great experience to interact with them by reading their posters, asking questions, listening to others ask questions, and listening to them talk about what they are passionate about when it comes to PD research.
States that were represented by researchers had them included on the teams scheduled for Capitol Hill visits. Fellow Texas advocate and PAN Assistant State Director Corey King commented that what PAN had done by bringing in these researchers was ‘nothing short of genius’ and I’ll share a bit of background to explain why…
Every state group handles their Capitol Hill visits a bit differently, depending on whether one of more in their group has experienced visits on Capitol Hill. The Texas group format has evolved since I’ve been involved in the visits. Our focus is spending the most time visiting about the issues at hand. We share with the newer members of the group that we want them to feel comfortable with the process. In order to get them acclimated, Corey or I will share some insight about previous visits and let them know up-front that no two visits are the same and the “feel” for what was accomplished during the visit is usually the same for the whole group. The most important thing that we share about Capitol Hill visits is that they have much to offer and that they are welcome to get involved in the visit to the extent that they feel comfortable.
We pretty much start our visits with Congressional staffers or the Congressman by introducing ourselves, give some background information about ourselves and delve into the current ‘asks”. These are the current issues that are of importance to the PD community and we share our concerns and ask for the member of Congress to support our efforts by action taken in committees or voting when these issues are up for a vote in the House or Senate. Most new advocates will introduce themselves and listen in on the conversation for a couple of visits before they get the feel of the process.
This past PAN Capitol Hill visit day was a memorable one and one of the most productive thus far, thanks to the newest member of our group, Biju Chandu, our Texas-based Parkinson’s Disease researcher who works at the University of Texas at San Antonio. His work presented at the PAN Forum was entitled, “Bone marrow-derived microglia based neurturin delivery protects against dopaminergic neurodegeneration in a mouse model of Parkinson’s Disease”. It has the potential to help evolve gene therapies for PD. As I’ve mentioned before, I feel that genetics research holds the key for many good things to come.
From the fist scheduled visit with staffers and Congressmen, Biju didn’t hesitate to offer his input, sharing his
research story and expressing his concern for the effects that reduced funding would have on research. We as advocates can talk about our experience of living with PD and the effects that it has on our lives and connect with congressmen and staffers that way, but because of PAN’s thoughtful
inclusion of researchers in the state groups, we were able to get our point across
from the patient, as well as the researcher perspective. A powerful combination indeed!
Thanks to a young man who is working tirelessly to find better treatments and therapies, several people on Capitol Hill have a greater understanding of the research process and the devastating effects that reduced funding will have across the nation..
Were our Hill visits effective before Biju joined our group? Yes.
Were our Hill visits even more effective after Biju joined us? Absolutely, without a doubt.
In my opinion, the combination of the Parkinson’s Action Network and the work that they do year-round to make our work as advocates easy, two men from Texas who share a close bond because of an incurable disease, and a soft-spoken young man with a passion for making a difference while using his talents as a researcher, we were able to provide a powerful message that made our Hill visits the most productive yet.