Dear Parkinson’s Support Group Members (please share with others),

Please help write letters to Governor Jerry Brown and to Donna Campbell who is the main person on health issues in his office. Please send an email to Donna.campbell@gov.ca.gov and also click here to fill out a form online for Governor Brown.
Why? The legislative portion of the budget process will be complete by this Thursday 6/15 and then the budget is off to the governor. He has until the end of the month (budget has to be in place by 7/1) to sign or veto.

Here’s a little info about the California Parkinson’s Disease Registry: Much remains to be elucidated about causes of Parkinson’s disease, a progressive neurodegenerative condition that affects at least 1,000,000 people in the United States. For example, little detailed information is available about the patterns and trends of incidence and prevalence across populations diverse with regard to race/ethnicity, socioeconomic status and history of exposure to occupational and environmental toxins. Recognizing that development of a statewide disease registry would facilitate research into PD etiology, The California Parkinson’s Disease Registry Act (CPDRA) [AB 2248, Frommer, Chapter 945] was enacted in late 2004. This legislation mandates the State Department of Health Services (CDHS) Director to conduct a program of epidemiological assessments of the incidence of PD (including monitoring associated with suspected chemical agents encountered by the public in general and occupational environments) and create a database of persons with this disease for research purposes.
 

Please use this letter as a Guide for your own letter

Governor Jerry Brown
c/o State Capitol, Suite 1173
Sacramento, CA 95814RE: Funds for the Implementation of the California Parkinson’s Disease RegistryDear Governor Brown
Choose what applies to you:
I have Parkinson’s or a member of my family has Parkinson’s.

I am writing to you in support of implementing funding for the California Parkinson’s Disease Registry.

A Population-based registry for Parkinson’s Disease in California would enable large strides in research with considerable state and federal funding.  While in 2004, the California Parkinson’s Disease Registry Act was signed into law, no state funds have been made available to establish or run such a registry to date.

If such an electronic system is developed and validated, they will for the first time allow health data derived registries to capture diseases such as Parkinson’s or Alzheimer’s disease; diseases that are primarily diagnosed clinically  and thus need to rely on health records. New preventive and therapeutic interventions may be discovered by such efforts and federally funded NIH grants will be encouraged since a registry resource in California would give access to a large and diverse numbers of patients.

California is a state that promotes innovation and is at the forefront of ingenious software development.  If the state supports a pilot project for electronic data capture from medical records in service of a Parkinson’s registry this would go a long way to test and encourage such innovative system development.

Thus I urge you to support funding the California Parkinson’s Disease Registry.

Thank you,

(Your name here)
(Your address here)

Parkinson’s Community LA