Ask Your Senators to Support National Parkinson’s Data Collection
Today, grassroots advocates from across the country have gathered on Capitol Hill with the Parkinson's Action Network (PAN) to speak with members of Congress about critical Parkinson's disease (PD) initiatives.
Not on Capitol Hill for this Parkinson's Day of Action? No problem – you can still show your support for public policies that improve the lives of people living with PD.
Contact your senators and tell them about the importance of the Advancing Research for Neurological Diseases Act (S.849/H.R. 292) before 5:00 p.m. ET today.
This bill would create a national data collection system for PD and other neurological diseases at the Centers for Disease Control and Prevention (CDC), enabling the CDC to track the incidence (number of new cases) and prevalence (number of all cases) of Parkinson's. This system would collect data on a number of factors, including the geography of diagnoses, variances in gender and changes in health care practices.
Currently, there are an estimated 1 million Americans living with PD, but we lack the resources for a more accurate count. Without access to data about the size and makeup of people with Parkinson's, the research community is limited in what it can accomplish.
This data would help researchers develop improved therapies for people living with PD today, allow for future planning of health care needs and help detect changes in health practices. In addition, the Parkinson's care and research communities could use this information to promote education and awareness about neurological diseases and the need for clinical research volunteers.
Thanks to the efforts of Parkinson's advocates the Advancing Research for Neurological Diseases Act was included in the 21st Century Cures Act, a bipartisan piece of legislation aimed at spurring development of new treatments for diseases. On July 10, 2015, the 21st Century Cures Act was passed by the House of Representatives by a resounding vote of 344 to 77. Now attention turns to the Senate.
Take action now, and help move this important piece of legislation forward. Find your senators and send them a message of encouragement or thanks for their support of the Advancing Research for Neurological Diseases Act.
Please share this post with family, friends and your Parkinson's community.
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