The mission of CSF is to advance knowledge through research and to educate the medical, allied sciences and lay community about Chiari malformation, syringomyelia and related disorders.
EDUCATIONAL LECTURE VIDEOS
You can watch full-length videos of all our educational lectures on our website!
WANT TO GET INVOLVED IN RESEARCH... RIGHT NOW?
Chiari RCT.CSF SEA Board member Dr. David Limbrick was recently awarded $2.8 million dollars for a randomized control trial (RCT) to determine what is the best type of surgery for Chiari and patient involvement is the most important part.
It can be hard for kids to go through a diagnosis of Chiari or syringomyelia... on top of school, family, friends and all kinds of other stress. Watch our friend, Erin, talk about what happened to her, how she handled school after surgery, and how she made new friends along the way!
Want to see more? Visit the Chiari@School page to learn more about how kids with these disorders can get more help in school so they don't fall behind!
CSF developed Consider Chiari to educate medical professionals and others directly involved in patient care about Chiari malformation, syringomyelia and related disorders.
If you are a healthcare provider in the United States and are interested in attending an upcoming Consider Chiari seminar, or if you are interested in implementing this educational campaign at your own place of work, please feel free to contact usat any time. And thank you for your dedication to improving patient care!
2016 RESEARCH COLLOQUIUM ON COGNITION
Every year, CSF hosts a research colloquium where experts in the field come together to hear the latest research on different topics. This year, the speakers talked more about how disorders like Chiari, hydrocephalus and others may greatly affect the cognitive abilities of patients. Discussions included the ways clinicians can "see" cognitive impairment on imaging, how pain can affect cognitive abilities in patients and much more. The full-length videos of these presentations are available to the public here!
COMMON DATA ELEMENTS & INTERNATIONAL PATIENT REGISTRY
The Common Data Elements (CDEs) for Chiari I malformation are officially available for public use by researchers on the NINDS/NIH website. The committee that worked on this project met every week by phone and twice a year in person for almost 3 years to put these research elements together. Input from scientists, physicians, engineers, industry partners, advocates, families, and patients was used to determine what CDEs would be most beneficial to research.
Thank you for supporting this huge effort and for offering your questions and comments to improve research into Chiari, syringomyelia and related disorders. We're one step closer to unlocking the future!Learn more about the CDE and ongoing international patient registry project.
PAST CSF FUNDED RESEARCH
International patient database & CDE project with patient/caregiver input (IN PROGRESS)
STATEN ISLAND, NY: CASINO NIGHT - SPEAKEASY MARCH 11, 2017
The 2017 CSF Casino Night Speakeasy will take place on Saturday, March 11th at the Hilton Garden Inn in Staten Island, New York. Join us that evening as we come together for a night of fine dining, gaming and some Prohibition-era fun with our community honoree, Nassau Community Hospital. To purchase tickets, take a journal ad, become a sponsor, or just learn a little more, visit the event page.
ATLANTA, GA: 6TH ANNUAL BOBBY JONES CLASSIC FOR CSF may 21-22, 2017
The sixth annual Bobby Jones Classic will take place on May 21-22, 2017 and will include many new surprises. To reserve your playing spot, or to sponsor the upcoming event, please visit bobbyjonesclassic.com.
Thank you to our 2016 BJC sponsors: Farrell Law Firm, P.C., Select Sector SPDRs, KPMG, Alston & Bird, L.L.P., Bobby Jones Sportswear, Doctors Community Hospital, William Blalock, J. Reynolds Furniture & Interiors,Bridgestone Gold, Fuzzy's Ultra Premium Vodka, Georgia Power/Southern Company, Dyke Industries, Inc., Touchpoint, Cambridge Wealth Advisors.
Past CSF Events
6TH ANNUAL DINNER DANCE FOR A CURE
The 2016 CSF Dinner Dance for a Cure took place on October 22, 2016 in Twinsburg, Ohio and raised important funds and awareness for patients and families affected by Chiari malformation, syringomyelia and related disorders! Thank you to our sponsors: University Hospital/Rainbow Babies & Children's Hospital, Porter Wright Morris & Arthur LLP, NDC Housing & Economic Development Corp., Key Bank National Association, and Dr. & Mrs. Edward Benzel.
1ST ANNUAL "SHINE A LIGHT" DINNER DANCE & AUCTION
The first annual Shine a Light on CSF Dinner, Dance and Acution took place on October 8, 2016 in Chicago, Illinois. Patients, families and honored guests mixed and mingled and enjoyed the fabulous night that raised funds and awareness for these disorders.Thank you to our 2016 sponsors: Walmart Foundation, The Flury Family.
2016 NIGHT OF LIGHT CHILDREN'S GALA
The 2016 Night of Light Children's Gala for CSF took place on November 19th at the Anderson House in Washington, D.C. and was limited to a small number of philanthropic guests. This event raised an incredible amount of funds to help make the International Patient Registry utilizing Common Data Elements a reality. Thank you to all who supported this beautiful evening and for offering hope to millions of families.