[aj04]

As some of you know, one of the longstanding difficulties of advocating for research dollars and creating a focus on PD has been our lack of an answer to a very basic question: How many people have PD?

The usual answer is about a million (in the US), although working guesses have ranged anywhere from 500,000 to 2 million. There is a lot of difference between 500,000 and 2 million.

There have been many attempts to start counting: Nebraska’s registry, California’s registry, I think New York has a registry, and probably other states and there have been voluntary registries such as the one created (but no longer operating, I hear) by the Muhammad Ali Center. Each of these has its own purpose and methodology not to mention geographic scope. What we need is a nationwide count of people with PD.

Well, the Parkinson’s Action Network (PAN) has coordinated efforts with the national MS Society and the Center for Disease Control (CDC) to pass legislation that would provide a realistic estimate to answer the question: How many people in the US have PD? Or MS?

That bill is H.R. 1362, the “National Neurological Diseases Surveillance System Act.” What started as a joint effort between PD and MS became the model for including all neurological diseases. Don’t let the words “Surveillance System” scare you. This registry will be built by data mining existing records. It is not a controversial bill.

H.R.1362 has passed out of the House and is only awaiting a Senate vote (on S.1273, the senate equivalent of H.R.1362)—a pro Senate vote. But, in this particular political season, there is much more at play than just voting on the merits of a bill and S.1273 is liable to become a victim of the system’s climate.

After the elections next week, the Senate will have only a few weeks—given Thanksgiving and end-of-year holiday breaks—to bring bills to the floor. There are hundreds of bills awaiting floor votes. We need to tell our senators that we want S.1273 to be one that gets considered and passed. While we have champions trying to make this happen, there is also a lot of competition to bring bills to a vote. And just as there are champions, there are influential senators who would rather sideline the bill.

There is an advocacy thread on the board now, questioning what can one do? You can go to PAN’s website, (www.parkinsonsaction.org) sign up for their Action Alerts, and send the pre-written letter asking for your senator’s efforts to see S.1273 pass into law. It’s easy: you can send the letter as written or you can personalize it; all you need to do is enter your name and address. From that information, they send the email directly to your senator.

If you want to go directly to the letter, you can click on http://capwiz.com/pan/issues/alert/?alertid=17948771 and you should be there.

If you are from or have a connection to Oklahoma in particular, please send me a message or call PAN (1-800-850-4726) and speak with Jennifer Sheridan or John Schall.

Please contact your senators! We’ve worked so hard for so many years to get an accurate count of people who have PD. It would be such a shame if we came this close only to let unrelated politics take us down.

[jeanb]

I've written to people I know in Oklahoma. I'm hoping they will call PAN about this important issue. AJ, I cc'd you on my email to Jen.

Jean