Thur 5/19 Houston, TX: Co-Morbidities of Chiari- Rob Parrish, MD Sat 6/25 Providence, RI: Disorders of Cerebrospinal Fluid - Various speakers Wed 7/13 Lanham, MD: TBA - Speaker TBA Sat 7/16 St. Louis, MO: TBA - Speaker TBA
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! Watch Dr. Limbrick talk about his multi-center study and how you can help make it happen!
Are you a runner or other type of fitness buff? You can put your hard work in the gym to do so much more! 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. Get started!
RESOURCE FOR PATIENTS: EDUCATIONAL LECTURE VIDEOs
CSF Chapters have been churning out some excellent educational videos since 2016 has started!
Dr. Pavel Klein recently 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.
Dr. Gerald Grant gave a fascinating talk on Chiari & the Mind and how some patients with Chiari experience cognitive symptoms that are hard to explain, such as memory loss and what is commonly referred to as "brain fog" among other issues like anxiety and depression.
Our Denver, Colorado local Chapter hosted a brilliant lecture by Wayne Connell, President and Founder of the Invisible Disabilities Association called "Invisible No More" that focused on the everyday realities of dealing with a disability that no one else can see.
On February 20th Dr. David Limbrick gave an awesome lecture (Chiari & Syringomyelia: Diagnosis & Treatment in 2016) on Chiari and syringomyelia as it stands in 2016-- what are the available diagnosis methods and treatments for patients and families who are affected.
The fifth annual CSF Bobby Jones Classic will take place on May 15-16, 2016 at historic East Lake Golf Club in Atlanta, Georgia.
CSF is working with Ideas United and other Atlanta organizations to spread the word about Chiari malformation, syringomyelia and related disorders to an even bigger audience! Visit www.bobbyjonesclassic.com for sponsorship and playing opportunities.
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
2016 charity ball
The 9th CSF Charity Ball took place on Saturday, March 12, 2016 at the Hilton Garden Inn - Staten Island. it was a fabulous evening with cocktails, a delicious dinner, online auction, and of course, lots and lots of gaming! Thank you to our sponsors: Neurological Surgery, P.C., JFS Investments, Farrell Law Firm, P.C., and Medtronic, Inc.