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.
ANOTHER SUCCESSFUL CSF CHAPTER ADDITION
Thank you to our newest CSF Chapter members who came out to the great lecture by CSF SEA Board member Dr. Gerald Grant at Stanford University Medical Center. Patients and families met up to get to know one anohter and offer support then immediately sat down to hear Dr. Grant lecture on Chiari & The Mind. You can watch the lecture here!
NEW EDUCATIONAL LECTURE VIDEO
Our Greater Metropolitan Washington Area Chapter recently had Dr. Pavel Klein as a guest speaker at their chapter meeting. Dr. Klein gave a great lecture on Seizures-- what they do (and don't!) look like and how they can be mistaken for other conditions or something as overly simplistic as behavior. There aren't even any slides. Just great descriptions of seizure... and what you can actually watch out for.
You can also check out the rest of our to our Educational Lecture Video page to watch other lectures that help patients with concepts as different as treatment methods and quality of life issues.
IMPROVING PATIENT CARE: CSF MAKES IT HAPPEN
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, 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.
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 more information or to get started!
CSF FUNDED RESEARCH
International patient database & CDE project with patient/caregiver input (IN PROGRESS)
The ninth annual CSF Charity Ball will take place on Saturday, March 12, 2016 at the Hilton Garden Inn -- Staten Island, NY. The evening will include fabulous cocktails, a delicious dinner, silent auction, and of course, lots and lots of fun gaming!
To see all the fun that was had at the 2015 Charity Ball, visit our Facebook page and view our 2015 Charity Ball photo album!
For more information, to purchase tickets, a sponsorship or journal ad, click here.
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.
We already have a handful of Consider Chiari events scheduled for 2016!
You can find other educational lectures and CSF events on our calendar.
If you are a healthcare provider located in one of these areas and are interested in attending or if you are interested in implementing this educational campaign at your own place of work, please feel free to contact us.
Past CSF Events
NIGHT OF LIGHT CHILDREN'S GALA
The sixth annual CSF Night of Light Children's Gala took place on Saturday, November 21st in New York City. This exclusive and unique white-tie event was held for a limited number of philanthropic guests at the James Burden Mansion. The money raised 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.