21st Century Cures Passes


The House of Representatives voted to pass the 21st Century Cures Act (HR 6) in 2015 and on December 7, 2016, the US Senate voted to pass an amended version of the bill! This legislation is incredibly important to our Chiari, syringomyelia and related disorder community! It ensures that scientists, doctors, and professionals around the country are given the opportunity to pursue new, exciting research projects and to ultimately ensure that innovative, effective solutions are found for patients– especially those who struggle with chronic, poorly understood conditions like CM, SM and related disorders.

What can 21st Century Cures Accomplish?

  • Make more funds available for innovative/potential breakthrough research
  • Improve research collaboration
  • Incorporate more patient perspective
  • Modernize and streamline clinical trials
  • Expedite access to experimental drugs for patients with serious conditions
  • “Personalize” medicine with advanced FDA procedures for drug development
  • Create a priority review process in the FDA for innovative medical device
  • Require the CDC to expand surveillance of neurological disorders

You can see a full list of the sections/stipulations of this legislation on the US Congress’ website. You can learn even more about 21st Century Cures and how it got started on the website for the Committee on Energy And Commerce.

What is S.849: Advancing Research for Neurological Diseases Act?

This bill was introduced by Senator Johnny Isakson (R-GA) as another part of 21st Century Cures. The goal of this bill is to specifically create a centralized data collection system to be maintained by the CDC to collect data on neurological conditions. Collecting and providing this data to researchers could be vital to help determine the cause conditions like Chiari malformations and syringomyelia. In addition to helping to find a cause, this data could help medical providers determine how to best care for patients with these conditions as well as help policy makers determine how to better understand these and many other neurological conditions.

2018 unite@thehill: Patient Education & Advocacy In Action


CSF is thrilled to announce that the 2018 unite@thehill will be a two-day patient conference of action! Join us on Sunday-Monday June 24-25, 2018 at the Bethesda North Marriott Hotel and Conference Center as we take on a day of learning and advocacy training and a full-day of marching on Capitol Hill to bring the patient voice to the powerful men and women in Congress who can enact laws that can help!

Visit our unite@thehill page to learn more.