Mon 10/3 Orlando, FL - Topic TBA - Dr. Eric Trumble Thur 10/12Lanham, MD - Topic TBA - Speaker TBA Thur 10/13 New York, NY - Topic TBA - Dr. Mark Souweidane Tues 11/15 Morristown, NJ - Topic TBA - Dr. Catherine Mazzola
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.
In partnership with the medical school of Brown University, CSF hosted a Consider Chiari symposium on CSF disorders in Providence, Rhode Island that offered Continuing Medical Education (CME) credits. One hundred medical professionals and professionals-in-training attended the symposium. Forty of the professionals-in-training were physician assistant students from Wagner College in Staten Island, New York who came to the symposium to learn how to recognize, diagnose and treat disorders like Chiari malformation, syringomyelia and related disorders in their future patients. CSF feels very strongly that educating the medical professionals of tomorrow is one of the most important ways to begin to change the experience for patients with these disorders.
CSF also hosted two educational lectures in July for the Greater Metropolitan Washingotn Area Chapter and St. Louis Chapter. Dr. Joseph Tregaskes discussed TMJ and sleep disorders in Lanham, Maryland and Dr. Maureen Lacy spoke about the neuropsychology of Chiari malformation (video coming soon!). You can watch all past CSF educational lectures in the Physician Lecture & Consider Chiari Series in our video archive.
COMMON DATA ELEMENTS FOR CHIARI PUBLISHED
The Chiari & Syringomyelia Foundation has been working very hard to create standardized measures for research studies and clinical practice that will help doctors around the world determine what is-- and is not-- important to Chiari, syringomyelia and related disorder patients and their families. These Common Data Elements, or "CDEs", have been submitted to the National Institutes of Health at the National Institute of Neurological Disorders and Stroke (NINDS).
The CDEs are now up for public comment for the next two months and will be finalized by the end of the year. When finalized, researchers will be required to use the CDEs in their studies in order to qualify for funding by the NIH. These CDEs will help "level the playing field" in Chiari research so that researchers around the world are measuring variables the same way-- which will help find conclusive answers that help everyone with these disorders, and not just a handful of patients. You can learn more about the ongoing CDE and international patient registry project here.
CSF PARTNERS WITH INVISIBLE DISABILITIES ASSOCIATION
CSF is proud to be a nonprofit partner of the Invisible Disabilities Association's 2016 Brain IDEAS Symposium on August 5th in Denver, Colorado. There is an impressive line-up of speakers and panels that will address different issues that affect patients with pain, illness and disability.
CSF FUNDED RESEARCH
International patient database & CDE project with patient/caregiver input (IN PROGRESS)
Looking to get involved in advocacy for patients and caregivers affected by Chiari malformation, syringomyelia and related disorders? Join us for the 2016 unite@thehill in Washington, DC! CSF will bring patient letters to Congress and will help you meet directly with your Senate/House representatives on Capitol Hill.
1ST ANNUAL "SHINE A LIGHT" CHICAGO DINNER DANCE
CSF is thrilled to host its first ever Dinner Dance in Chicago, Illinois where Chiari, syringomyelia and related disorder patients will get together for a night of dining, dancing and raising awareness and funds! Learn more about the event here. Thank you to our 2016 sponsors: Walmart Foundation.
5TH ANNUAL DINNER DANCE FOR A CURE
Join us on October 22, 2016 at the Hilton Garden Inn in Twinsburg, OH for a fabulous evening of dinner, dancing, and silent auction! Learn more about sponsorship opportunities, purchase a journal ad, and the event here.
CSF developed Consider Chiari to educate medical professionals and others directly involved in patient care about Chiari malformation, syringomyelia and related disorders.
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
5TH ANNUAL BOBBY JONES CLASSIC FOR CSF
The fifth annual CSF Bobby Jones Classic took 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.