PAN Forum 2013

Note: This is a repost from last year. It’s about to happen again. Science still needs your support.

What am I doing in Washington, DC, and why am I pestering all of you to write letters to your Congress Members?

I’m so glad you asked. I am being hosted in our nation’s capitol by the Parkinson’s Action Network, an umbrella group advocating for Parkinson’s disease patients, families, caregivers, and researchers. You can read more about PAN and the work they (we) are doing here:

Each year, PAN hosts a forum to bring together people whose lives and work are touched by Parkinson’s diease. I will be able to tell you more after the Forum starts, which will be in about an hour. Other scientists are here, including 20 other postdocs from around the country, as well as Parkinson’s advocates from various backgrounds. I’m looking forward to meeting the other people who are here and learning more about their backgrounds and perspective.

Along with the other postdocs, I will be presenting our work in a poster session this evening. There are other scientific talks during the day today, but this is not a standard scientific conference. We will also be hearing from the leadership of the major Parkinson’s disease foundations, from advocates working in the policy realm, and I’m sure there will be discussion of the current federal budget wranglings on the agenda. Tomorrow, we will have advocacy training, and Wednesday we will be meeting with Congress Members on Capitol Hill to advocate for support of Parkinson’s research specifically, and biomedical research in general. PAN is also sponsoring a call-in day on Wednesday. You can support our efforts by making a phone call to your Congress Members. It’s easy. Details are here:

Because the Forum is an annual event, planned well in advance, it is happenstance that we are here at a critical moment in the history of government supported research. In case I didn’t say that with enough emphasis, please let me repeat it. We are at a critical moment in the history of government supported research. Researchers are under intense budget pressure to the point that the ability to do work is undercut by Sisyphean grant application cycles, scientists early in their careers often have trouble seeing sustainable career options, and the excitement of discovery is too often tinged with intense worry over issues of basic subsistence, both personally and professionally. As funding constricts, research positions are lost, and labs closed. Highly trained professionals too often worry over whether they will have jobs that provide for their basic needs and those of their families. This at a time of remarkable discovery, when the returns on the investment of previous decades are manifest, when science is fulfilling promises. We can do things now that seemed fantastic when I began my career as a researcher. The amount of information in databases, at my fingertips, boggles the mind. We are making so much progress, scientifically. We are doing what you pay us to do. But the infrastructure of scientific endeavor is falling apart. We have build a house. There are weeds in the yard, and before long the roof will be leaking. With more time and neglect the foundation will crack. It is negligent. It is unwise stewardship. It is not the way I hope a civilized society would behave. We need to turn this around.

It is a privilege and an honor to be at the Forum for many reasons. Near the top of my list is that, as a nonclinical researcher, I have no formal contact with patients and families. I am looking forward to hearing the stories of people living with Parkinson’s disease, and caring for loved ones who are affected. Science gives us the ability to change things that were once inevitable, to relieve suffering that was once implacable, to instill hope where there was none. There are many reasons to do science; these are some of mine.

I hope you will consider taking a bit of time to support our efforts in whatever way you can. If you would like to write a letter for me to deliver to Congress, please contact me on twitter at @nparmalee. Please call your Congress members, now, and whenever you have concerns that you feel need to be addressed. We live in a representational government. They work for you. And please follow the hashtag #PANForum as the week goes on to find out more.


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