- 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.
To follow these both the Senate and the House bills
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.