Mon 10/3 Orlando, FL - Complications of Chiari - Dr. Eric Trumble Wed 10/12Lanham, MD - Topic TBA - Speaker TBA Thur 10/13 New York, NY - Syringomyelia - 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.
Want to become a strong advocate for patients and families struggling with Chiari malformation, syringomyelia and related disorders? Participate in CSF's unite@thehill!
You can either attend in-person in Washington, DC on September 10th and 11th or you can write a letter to your Congressional representative(s) and send it to us by mail (29 Crest Loop Staten Island, NY 10312) or email before September 9th and CSF staff/volunteers will personally walk your letter to the office of your representative(s)!
Visit the advocacy section of our website for some help on your letter-writing.
**2016 CSF RESEARCH COLLOQUIUM - COGNITION IN CHIARI**
Every year, CSF hosts a research colloquium where experts in the field come together to hear the latest research on different topics related to Chiari malformation, syringomyelia and related disorders.
This year, the topics to be discussed is the role of cognition and how disorders like Chiari, hydrocephalus and other conditions can greatly affect the cognitive abilities of patients. The fascinating presentations this year include discussions on the ways clinicians can "see" cognitive impairment on imaging, how pain can affect cognitive abilities in patients and much more.
All physicians and other medical professionals are invited and encouraged to attend this conference and learn more about how these disorders may be affecting their patients. If you are a clinician who would like to attend or who would like to send someone on behalf of your practice, please contact us.
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 FUNDED RESEARCH
International patient database & CDE project with patient/caregiver input (IN PROGRESS)
CSF is thrilled to host its first ever Shine A Light on CSF Dinner Dance & Auction on October 8th in Chicago, Illinois where Chiari, syringomyelia and related disorder patients will get together for a night of dining, dancing and raising awareness and funds!
Thank you to our 2016 sponsors: Walmart Foundation, The Flury Family.
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 NIGHT OF LIGHT CHILDREN'S GALA
The CSF Night of Light Children's Gala is an annual, private event for a limited number of philanthropic guests. This year, the annual Gala will take place at Anderson House in Washington, DC on the 19th of November.
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.