As the end of another year approaches, we take the opportunity to reflect on the progress and achievements the Chiari & Syringomyelia Foundation made in 2013. Thanks to your generous gifts, support and participation, we accomplished many of the goals we set for 2013, and we continue to establish new and exciting events. As one of our most productive years draws to a close, I’d like to update you on the significant achievements we accomplished in 2013.
CSF continues to grow exponentially, as we have increased our efforts to raise awareness about Chiari malformation and syringomyelia. We now have twelve regional chapters in the United States, which offer free quarterly educational lectures for both physicians and patients. These lectures are videotaped and then posted for public viewing on our brand new website, complete with mobile capability. In 2013, there were roughly 44,000 new visitors to the CSF website.
At CSF, we often hear that some medical professionals are simply unfamiliar with what Chiari is—and we are determined to change this. We have put together an educational program called Consider Chiari with the objective to spark awareness, putting Chiari on the radar of medical professionals.
In 2013, CSF’s unite@night brought 2,255 people together across the country, and in Canada. The number of walks more than doubled from sixteen last year to forty-one, and helped to raise awareness and upwards of $150,000 to support our programs.
May 2013, we held our second annual Bobby Jones Classic for CSF golf tournament at the East Lake Golf Club in Atlanta, GA, the home of the FedEx Cup Tour Championship, and the home course of legendary golfer Bobby Jones. Several family members were in attendance, including Dr. Bob Jones IV, grandson of Bobby Jones. Tournament guests were also treated to informative presentations by two Bobby Jones historians: Sid Matthew and Dr. Linton Hopkins. The third Bobby Jones Classic for CSF will be held on May 19, 2014. Please consider joining us for this unique event. Visit www.bobbyjonesclassic.com for more information.
In March, our annual Charity Ball in New York, featured our first “Casino Night” and a memorial for Heather Andrews, who passed away from complications caused by her Chiari and related conditions. In October, we held our third annual Dinner Dance for a Cure in Ohio, which included a brief presentation, dinner, dancing, and silent auction.
We also recently completed our most prestigious event, the fourth annual Night of Light Children’s Gala, at the James Burden Mansion in New York City. This special evening included philanthropic guests, international ambassadors, illustrious musicians and artists, and world-class physicians who treat Chiari and syringomyelia. We were most fortunate to honor Mr. and Mrs. Michael Mikula for their continual support, Lord and Lady Malloch-Brown, and Prof. Rodney Grahame and Dr. Ulrich Batzdorf for their astounding clinical
contributions to the field. There was a tremendous outpouring of support from Goldman Sachs Gives, thanks in large part to Board of Trustee member Adam Korn. The evening also included a keynote speech from Mr. Duncan L. Niederauer, the CEO and Director of NYSE/Euronext.
Funding relevant research is a top priority, and CSF continues to proudly sponsor lectures and conferences featuring doctors and scientists. The second CSF Hydrodynamics Symposium featured scientists from Europe, Australia, and the United States, who presented their research on Chiari malformation, syringomyelia, and hydrocephalus from an engineering and scientific perspective.
On the clinical side, we sponsored the second CSF Research Colloquium in San Francisco, featuring speakers from China, Japan and the US. Fifteen speakers presented their research, and helped to form a consensus on craniocervical hypermobility. The meeting was filmed and the results will be published in a book.
CSF continues to fund ongoing research projects:
• Automated MRI-Based Parcellation of the Posterior Cranial Fossa
• Mapping Perivascular Spaces in the Spinal Cord toward Improved Spinal Cord Flow Models
• Development of Numerical Model of Spinal CSF Dynamics
• Genetic Dissection of Chiari I Malformation
CSF continues to develop a CM and SM National Patient Registry and has begun to work on this project alongside the National Institute of Neurological Disorders and Stroke at the NIH. We will continue to update you on its progress.
It’s been a very productive year, as we continue to build a solid foundation and set our course for the future. Join the CSF community and stay up-to-date on upcoming news and events with periodic email updates. Just visit our website at www.CSFinfo.org, click on Contact Us at the top of the site, update your information, and we will add you to our email contact list.
And please consider making your year-end tax-deductible contribution to CSF by donating on our website. Click the Donate button and fill out the form. If you prefer to mail your gift, please send in the envelope provided.
Your continued generosity and support makes all this possible! Have a Healthy & Happy 2014!