Today, the president signed a bill that increases federal research funding and takes important steps to better support our nation's care partners. Through its tireless advocacy work, the Parkinson's community played a role in the passage of this important law.
Law Bolsters Funding for Research
A critical provision provides funding for the National Neurological Conditions Surveillance System. This database will capture demographic information on people living with neurological diseases, which is key to helping researchers target their work and increase understanding of these conditions. While it was signed into law in late 2016, the database was never funded or implemented. But with the passage of this bill, it now can become a reality. (As the law does not specify which diseases the National Neurological Conditions Surveillance System will track, the Foundation is working with the Centers for Disease Control and Prevention, which will house the database, to push for the inclusion of Parkinson's.)
The law also includes a $2 billion funding increase for the National Institutes of Health (NIH). The NIH is the largest public funder of Parkinson's research, investing $169 million in the disease in 2017. This funding boost is key to supporting the foundational research the agency carries out to better understand, diagnose and treat various health conditions.
Throughout 2018, the Parkinson's community made a strong push for these funding priorities. Thousands of people with Parkinson's and their loved ones sent their lawmakers more than 46,000 emails asking for money for the database and the NIH. These funding successes are a testament to the critical work of Parkinson's advocates across the country.
New Council Seeks to Better Support Care Partners
Another significant provision in the law provides $300,000 to fund activities outlined in the RAISE Family Caregivers Act. This act was signed into law in January 2018, thanks in part to the advocacy efforts of the Parkinson's community, and directs the government to create a national strategy to better support the estimated 40 million care partners across the country. The $300,000 will be used to create a Family Caregiving Advisory Council, which will identify actions that communities, providers, policymakers and others can take to better assist care partners.
We encourage you to reach out to you legislators to thank them for passing this law. This helps members of congress better understand how they can use their votes to pass bills that positively impact our community. You can quickly send your lawmakers an email on our website.
Stay tuned to our blog for updates on the implementation of the National Neurological Conditions Surveillance System, as well as findings from the Family Caregiving Advisory Council.