Chiari patients are real people with many different symptoms and problems. If a patient only sees a neurosurgeon, an important part of their care may be missed. In this video from a 2015 CSF-sponsored research meeting, multiple experts from many fields of medicine-- from neurosurgery to immunology-- explain why treating the whole patient (not just their brain!) can help patients with Chiari, syringomyelia, Ehlers-Danlos syndrome and other related disorders. The problems may be complex but if all the experts come together, we can improve patient care and help families get their lives back.
2015 CSF RESEARCH COLLOQUIUM
Ful-length videos and information about the 2015 CSF Research Colloquium: Mechanisms and Pathophysiology in Chiari Malformation and Related Disorders is up on our website! Watch and learn more here!
Are you a runner or other type of fitness buff? You can put your hard work in the gym to do so much more than just keeping yourself healthy! Join CSF's Train4Brains initiative and start fundraising to support research projects and educational programs to grow awareness and knowledge about Chiari malformation, syringomyelia and related disorders. We'll even set you up with your very own, customized fundraising website! Contact us for information!
Looking for a new challenge? MapMyFitness users can enter a new challenge and become eligible to win $1,000 donated to CSF and $1,000 in Underarmour gift certificates for themselves!Learn more!
INTERNATIONAL HYDRODYNAMICS RESEARCH SYMPOSIUM
CSF was once again very proud to sponsor the 3rd International CSF Hydrodynamics Symposium in Amiens, France this past July 9-10! Special thanks to the Monkton Institute for the generous grant allowing us to sponsor this critically important meeting. The engineers discussed how cerebrospinal fluid flow can cause clinical symptoms and full-length lectures are now available. You can learn more about past symposia 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 to compete on a national and international level. He was also diagnosed with syringomyelia.
CSF has worked closely with the Jones family for many years to educate people 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. The tournament serves as a tribute to Jones and his legend. This past year, a grant funded to Georgia Tech saw the development of a prototype device that allows children with differing levels of disability to become involved in golf. Jones' passion was helping children; combining his love of golf to help children become more physically active, this project keeps the legacy of Bobby Jones alive. Learn more about the prototype and 2015 demonstration here.
We are also happy to announce our new partnership with McTier Art to capture the beauty that is Jones' swing and the magic moments in his life. The oil 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 the artists. More about the artists.
CSF FUNDED RESEARCH
International patient database & CDE project with patient/caregiver input
The sixth annual CSF Night of Light Children's Gala will take place on Saturday, November 21st in New York City. This exclusive and unique white-tie event will be held for a limited number of philanthropic guests at the James Burden Mansion. The money raised this year will help fund an international database that is currently being developed and also support the ongoing research efforts that will ultimately lead to improved understanding, methods of diagnosis and treatment options. More information.
5TH ANNUAL DINNER DANCE FOR A CURE
The fifth annual Dinner Dance for a Cure took place on Saturday, October 24, 2015 from 6pm to 11:00pm at the Hilton Garden Inn in Twinsburg, Ohio. The evening was one of cocktails, dinner, dancing, silent auction, and raffle.
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.
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.