Sunday, February 21, 2010

The Time Has Come for A National Registry for Parkinson's Disease

Our Armchair Attendance at the 2010 Parkinson's Action Network (PAN) Forum 

A few days ago we signed in to "attend" the 16th annual PAN Research and Public Policy Forum in Sunnyvale, CA without having to venture into the midwest cold.  We stayed from beginning to end, no mean feat when one of us has PD.  We really like webcasts because they provide us with the ability to interact while not having to say "excuse me/pardon me" when it's time for a pit stop. 
Although we have written about some of the covered topics in recent months, we'd like to mention one very important issue: data analysis of neurodegenerative conditions because it is an area where we all can have a voice.  The Parkinson's Action Network is our advocacy voice but without our support in return, that voice will not be nearly as loud.
  • Important legislation is in committee and in order for the best interests of people with Parkinson's to be represented, it is important that your Congressmen and women and your Senators to be encouraged to co-sponsor HB-1362, the National MS and Parkinson's Disease Registries Act. The Senate equivalent bill is S-1273.
  • Without the statistics generated by such a registry, which will draw from a number of resources, target areas cannot be identified, the need for certain research dollars are hard to justify, better data for research and treatment can be delayed.  
  • Currently we do not have a accurate information regarding the incidence and prevalence of PD and other neirodegenerative diseases.  These statistics are necessary when planning programs and services, advocating, and focusing research for risk factors, genetics, environmental exposure, changes in incidence/prevalence/distribution.  Earlier studies did not have the higher proportion of older Americans in the mix and most certainly did not have the incidence figures for Young or Early Onset Parkinson's (YOPD). 
  • The National Registry will draw securely from a broad source of available information in order to compile the requisite information.  While there are two states which do have the records and provide good models, what is needed is a national picture.
  • To lend your support for HR-1362 you can click here to link to the PAN prepared letter site.
  • You will then prepare your email message 
  • Simply type in your zip code, the proper representatives' email address(es) will appear - depending on the district - you may have to add your home address.
  • Do not forget to enter your email address if you will be sending through the PAN system.  If you are mailing the letter, it may not be necessary
  • You can then use the letter template
  • ADD your personal story or message if possible because it carries more weight.
  • Write your additions to the letter in 5 minutes or less - okay, it might take longer but not that long - I just did mine. The system will indicate if your legislator has already co-sponsored the bill and will generate a thank you letter - be sure to send that
  • Otherwise send the request for co-sponsoring letter with your personal revisions or additions
  • To send a message to your senator requesting support for S.1273 - yes, separate letters are needed, click here.
I've sent mine and Steve will be sending his soon.  I hope that you will join us.
Just a reminder from the PAN forum, if you're written to your legislators before and they had responded positively, be sure to thank them. When you're bombarded by requests, problems and complaints, it is nice to read a kind word. 
We'll be back with more information from the forum.  But just in case you'd like to view it, you can do so by going to the Parkinson's Action Network website. I'm not sure if it is posted yet but if it doesn't, just bookmark it and return in a few days. 

To follow these both the Senate and the House bills
Senate Bill: S.1273 National MS and Parkinson's Disease Registries Act

The next webcast of  Parkinson's disease interest is from the Parkinson's Disease Foundation and this event will be held on Tuesday, February 23, 2010 at 1:00 pm EST.  The topic is Nutrition and Parkinson's Disease.
You can link to the PDF website for webcast access here.

1 comment:

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