There are an incredible 45 unite@night walks already on the books to raise desperately needed awareness and education/research funds that will help families who are struggling with Chiari malformation, syringomyelia and related disorders. Find a walk near you!
Don't see a walk in your area? You can set up your own! Set up a unite@night walk or host a Solo Walk with just your friends and family. Learn more about how to make a difference on your own.
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 corportate sponsor, but still want to sponsor a walk near you? You can become a symptom marker sponsor for just $50. Just fill out this form!
**2017 NEW EDUCATIONAL LECTURES**
It's a new year, and the CSF Educational Lecture Series is off and running once again! The first educational lecture was held in Lanham, Maryland at Doctors Community Hospital on January 11th. The expert speaker was Dr. Jonah Murdock, one of the most experienced neuro-urologists in the United States. Dr. Murdock spoke about urological issues in patients with connective tissue disorders and hypermobility. His lecture is now available online!
Recently, Susan Chalela spoke about physical therapy in patients with Ehlers-Danlos syndrome at the Charleston, South Carolina lecture at MUSC. And there are a few lectures scheduled for the rest of February in Birmingham, Alabama and Augusta, Georgia. 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!
COMMON DATA ELEMENTS & INTERNATIONAL PATIENT REGISTRY
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.
PAST CSF FUNDED RESEARCH
International patient database & CDE project with patient/caregiver input (ongoing)
STATEN ISLAND, NY: CASINO NIGHT - SPEAKEASY MARCH 11, 2017
The 2017 CSF Casino Night Speakeasy will take place on Saturday, March 11th at the Hilton Garden Inn in Staten Island, New York. Join us that evening as we come together for a night of fine dining, gaming and some Prohibition-era fun with our community honoree, South Nassau Communities Hospital. To purchase tickets, take a journal ad, become a sponsor, or just learn a little more, visit the event page.
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 new surprises! Learn more, reserve your playing spot, or sponsor the event by visiting 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.
Past CSF Events
6TH ANNUAL DINNER DANCE FOR A CURE
Thank you to our 2016 DDC Sponsors: University Hospital/Rainbow Babies & Children's Hospital, Porter Wright Morris & Arthur LLP, NDC Housing & Economic Development Corp., Key Bank National Association, and Dr. & Mrs. Edward Benzel.
2016 "SHINE A LIGHT" DINNER DANCE & AUCTION
Thank you to our "Shine A Light" sponsors: Walmart Foundation, The Flury Family.
2016 NIGHT OF LIGHT CHILDREN'S GALA
The 2016 Night of Light Children's Gala for CSF raised an incredible amount of funds to help make the International Patient Registry, utilizing Common Data Elements a reality.