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.
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 topic to be discussed was 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 included discussions on the ways clinicians can "see" cognitive impairment on imaging, how pain can affect cognitive abilities in patients and much more.
Some of the videos from this meeting are now up on our website! Take a look here while we work on getting the rest up here!
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)
WASHINGTON, DC: NIGHT OF LIGHT CHILDREN'S GALA NOVember 19, 2016
This white-tie event is held for a limited number of philanthropic guests. For more information, please contact us directly. Thank you.
ATLANTA, GA: 6TH ANNUAL BOBBY JONES CLASSIC FOR CSF may 21-22, 2017
The sixth annual Bobby Jones Classic will take place on May 21-22, 2017 and will include many new surprises. To reserve your playing spot, or to sponsor the upcoming event, please visit bobbyjonesclassic.com.
Thank you to our 2016 BJC sponsors: Farrell Law Firm, P.C., Select Sector SPDRs, KPMG, Alston & Bird, L.L.P., Bobby Jones Sportswear, Doctors Community Hospital, William Blalock, J. Reynolds Furniture & Interiors,Bridgestone Gold, Fuzzy's Ultra Premium Vodka, Georgia Power/Southern Company, Dyke Industries, Inc., Touchpoint, Cambridge Wealth Advisors.
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.
The first annual Shine a Light on CSF Dinner, Dance and Acution took place on October 8, 2016 in Chicago, Illinois. Patients, families and honored guests mixed and mingled and enjoyed the fabulous night that raised funds and awareness for these disorders.Thank you to our 2016 sponsors: Walmart Foundation, The Flury Family.