Participants Needed for Genetics Study. You can learn more and get involved with a genetics study that is recruiting families affected by Chiari and syringomyelia!
Chiari RCT. CSF SEA Board member Dr. David Limbrick was awarded $2.8 million dollars for a randomized control trial (RCT) and patient involvement is the most important part.
CSF International Patient Registry Project. CSF is currently beginning work on a huge, international patient registry that has never been attempted before... and we need your help.
CSF continues to be a proud sponsor of the international CSF Hydrodynamics Symposium, which is an international meeting consisting of engineers, bioengineers and mathematicians. Researchers come together to discuss the pathology of cerebrospinal fluid flow disruption, and how the fluid dynamics related to CSF flow in patients with Chiari and syringomyelia may cause symptoms.
The 2017 symposium took place on June 19-20, 2017. You can learn more about the symposium and its speakers and watch full-length presentations from the meetings here .
Help us raise desperately needed awareness and education/research funds that will help families who are struggling with Chiari malformation, syringomyelia and related disorders.
Thank you to the 2017 national corporate/family sponsors who have already signed on to support these events: The Mikula Family (main sponsor), The Stewart Restaurant Group and Sports Gallery USA . Not a big corporate sponsor, but still want to sponsor a local walk near you? You can become a symptom marker sponsor for only $50! Just fill out this form and send it to firstname.lastname@example.org !
We held numerous educational lectures last year with topics ranging from urological considerations of Ehlers-Danlos syndrome and physical therapy in hypermobile patients to the tougher subjects like pain management in Chiari and related disorders. Did you miss or were too far to attend one of these lectures? You can always watch the full presentations on our website. We make every CSF sponsored lecture freely available online for patients, families and medical professionals.
More lectures are always being added to be sure to check the CSF Calendar of events to find a lecture that may be coming near you!
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! 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!
The Common Data Elements (CDEs) for Chiari I malformation are officially available for public use by researchers on the NINDS website. 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 this project.
Upcoming 2018 Events
7TH ANNUAL BOBBY JONES CLASSIC FOR CSF
may 20-21, 2018
The seventh annual Bobby Jones Classic will include even more new surprises! Learn more by visiting bobbyjonesclassic.com .
Thank you to our 2017 BJC sponsors: Farrell Law Firm, P.C., Select Sector SPDRs, The Farrell Law Firm P.C., KPMG, Sunice, Alston & Bird LLP, Bobby Jones, Doctors Community Hospital, TruGolf, 47 Brand, Bridgestone Golf, Touchpoint Support Services, Robert P. Brady Agency, Southern Wine & Spirits of America Inc., Fuzzy's Ultra Premium Vodka, and DJJ Technologies.
Join us for a fabulous evening of dinner, dancing and silent auction.
This exclusive and unique white-tie event will be held for a limited number of philanthropic guests at Brooks's in London, England. 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.