Watch Dr. Holly Gilmer discuss tethered cord syndromehere.
ADVOCACY ALERT: 21ST CENTURY CURES ACT (HR 6)
There is a huge piece of legislation being voted on in the House of Representatives! Help advocate for the over one million families affected by Chiari, syringomyelia and related disorders. Learn how to help RIGHT NOW!
georgia tech/e-z-go/csf golf car project
CSF joined with Georgia Institute of Technology, E-Z-GO and Jones Global Sports to develop an innovative golf car to allow children with differing levels of disability to get healthy and active by allowing them the ability to play golf! Learn more about this project, which was unveiled at the 2015 Bobby Jones Classic for CSF, here.
artistry and golf give back in honor of bobby jones
Robert Tyre "Bobby" Jones Jr. was an American amateur golfer and lawyer by profession, who helped design the Augusta National Golf Club and co-founded the Masters Tournament. He was the most successful amateur golfer ever to compete on a national and international level. He was also diagnosed with syringomyelia.
CSF has worked closely with the Jones family over several years to educate physicians, allied scientists and the lay community about Chiari malformation, syringomyelia and related disorders. The Bobby Jones Classic for CSF is an annual golf tournament held at Jones' home course of East Lake that serves as a tribute to the legend and the man. This year, we are happy to announce our partnership with McTier Art to capture the beauty that is Jones' swing and the magic moments in his life, with oils. These paintings will inspire generations through artistic medium and help raise funds for ongoing research projects through the sale of a limited number of reprints. To learn more about these paintings, made available only once in a lifetime, contact us or McTier Art. To learn more about the artists, visit their site.
international hydrodynamics research symposium
We are once again very proud to sponsor the 3rd International CSF Hydrodynamics Symposium, taking place in Amiens, France on July 9th and 10th of this year. Special thanks to the Monkton Institute for the generous grant allowing us to sponsor this critically important meeting that seeks to help patients struggling with Chiari malformation & syringomyelia. Learn more about past symposia here.
NBC sports, tour championship help spark awareness
NBC Sports and the TOUR Championship by Coca-Cola helped bring about more awareness for Chiari malformation, syringomyelia and related disorders on Saturday, September 13, 2014 when Emmy-award winning sportscaster Jimmy Roberts interviewed CSF Chairman Paul Farrell (pictured left, with Dorothy Poppe, CSF Executive Director), and Bobby Jones historian, Dr. Linton Hopkins. The pair discussed syringomyelia, which brought Bobby Jones' legendary golf career to a swift halt. The spot highlighted the fact that syringomyelia, Chiari and their related disorders affect over a million people in the US, alone; more than ALS (Lou Gehrig's disease). But while ALS had its "ice bucket challenge," similar awareness for Chiari and syringomyelia has yet to be sparked. Roberts, NBC Sports and the TOUR Championship hope that this interview will help raise the awareness and funds necessary to get rid of these disorders, for good. Thank you to Jimmy Roberts, NBC Sports, the TOUR Championship and East Lake Golf Club for your support! *Press Release
Chiari Fellowship at the Duke Center for Human Genetics.
*CSF is also undertaking the momentus task of putting together the first EVER international patient database that will help to improve research for people with Chiari malformation, syringomyelia and related disorders. Learn more.
Going on right now: the 2015 unite@night walks help over one million families affected by Chiari, syringomyelia and related disorders. Unite with us this summer to "solve the puzzle" of frustrating symptoms... BE A HERO!
4TH ANNUAL DINNER DANCE FOR A CURE
The fourth annual Dinner Dance for a Cure will take place on Saturday, October 24, 2015 from 6pm to 11:00pm at the Hilton Garden Inn in Twinsburg, OH. The evening will include cocktails, dinner, dancing, silent auction and raffle.
The sixth annual Night of Light Children's Gala will take place on Saturday, November 21st. This exclusive and unique white-tie event will be held for a limited number of philanthropic guests at the James Burden Mansion in New York City. It is our hope that the money raised this year will help fund our international data registry, and support the ongoing research efforts that will ultimately lead to improved understanding and methods of diagnosis and treatment. More information.
4TH ANNUAL BOBBY JONES CLASSIC FOR CSF
The fourth annual Bobby Jones Classic for CSF was held on May 17-18, 2015 at world-renowned East Lake Golf Club in Atlanta, Georgia. This exquisite weekend included a cocktail reception on the evening prior to the tournament, a full day of golf at East Lake, an exciting Alexa Stirling putting competition, all culminating with an awards dinner.
For details and sponsorship information for the 2016 Bobby Jones Classic for CSF, visit the Tournament website.
Eighth Annual csf charity ball
The eighth annual CSF Charity Ball took place on Saturday, March 14, 2015 at the Hilton Garden Inn -- Staten Island, NY. The evening was a huge success and included fabulous cocktails, a delicious dinner, silent auction, and of course, lots and lots of fun gaming!
Thank you to our sponsors: Chiari Connection International, The Farrell Law Firm, Farrell Family and Friends, Bob and Mary Foreman, Long Island Veterinary Specialists, North Shore-LIJ Health System, Marquis Health Technologies, Joseph Salvani, Santana Partners, and Weill-Cornell Medical College.
2015 Charity Ball picutres are coming soon! To see all the fun that was had at the 2014 Charity Ball, visit our Facebook page and view our 2014 Charity Ball photo album! You may also click here for a recap of the evening.
Some experts estimate that it can take a patient an average of six years to recieve a proper diagnosis of Chiari malformation!
Through no fault of their own, many medical professionals are only vaguely acquainted with Chiari and the methods by which it can be treated. CSF wants to help change this. We have put together an educational program called Consider Chiari. The objective of this campaign is to spark awareness, putting Chiari on the radar of more medical professionals and to increase the likelihood that patients' needs will be met. We want people to Consider Chiari.
Are you a medical professional interested in learning more about this Consider Chiari? Maybe you are interested in implementing this educational campaign at your place of work? Contact us for more information andlearn more about past Consider Chiari events.