Living with a debilitating disorder or disability can make anyone feel powerless... but you have more power than you think.
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.
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.
CSF wants you to bring your voice andface to Washington D.C. to make a difference for people living with Chiari malformation, syringomyelia and related disorders. It may seem daunting at first to contact your Washington representatives, but your reps are waiting to hear from you, and there a plenty of ways to reach out and be heard!
First thing's first: how would you be best suited to advocate? Would you like to join us this September and meet your representative in person? Are e-mails more your style? Maybe you're more old-school and you'd rather write a letter? Watch the unite@thehill video series to get a better idea about how you would like to advocate for the children and adults living with these disorders!
Once you've decided how you want to help, the next step is to determine who is your senator or representative? Find your own local representatives in order to get your advocacy off the ground! Their websites will include all their contact information including mailing addresses and e-mails, alike.
In-person meeting at the unite@thehill: If you want to attend CSF's unite@thehill in Washington, DC, a CSF staff member will help you schedule an appointment to meet with your representative's staff! Please wait for more information on upcoming advocacy days to Capitol Hill.
Writing a letter/e-mail: Want to write to your rep, but the creative juices aren't flowing just yet? Take a peek at thissample letter, and put that pen to paper (or fingers to keyboard)! Briefly explain your story and why supporting scientific medical research is important to you.
Whether you're writing an e-mail, or a letter, remember the three easy-to-remember rules:
Know What to Ask
For more information or questions on how to effectively advocate, please contact us!