At this joyous time of year, we reflect on the many blessings this year held for the Chiari & Syringomyelia Foundation. Thanks to you and your generous gifts, we accomplished many short term goals in 2014, established the framework for many exciting long term projects, and now we look forward to a fruitful and productive 2015. I’d like to update you on the progress we made in 2014.
The 2014 CSF Research Colloquium focused on co-morbid conditions that can complicate Chiari diagnosis and treatment. It was a truly fascinating collection of talks!
You can find lectures and discussions on topics everywhere from the genetics of Chiari malformation and connective tissue disorders, physical therapy considerations after surgery, all the way to the different manners by which medications can affect every individual patient differently. There's even a lecture on Chiari in dogs! Check out the full list of topics and lectures here!
Also be sure to check our Physician Lecture Series for a new video from Dr. Claudia Camelia Cotca from the Greater Metropolitan Washington Area Chapter meeting!
NBC sports, tour championship help spark awareness
NBC Sports and the TOUR Championship by Coca-Cola helped bring about more awareness for Chiari malformation, syringomyelia and related disorders on Saturday, September 13, 2014 when Emmy-award winning sportscaster Jimmy Roberts interviewed CSF Chairman Paul Farrell (PIctured left, with Dorothy Poppe, CSF Executive Director), and Bobby Jones historian, Dr. Linton Hopkins. The pair discussed syringomyelia, which brought Bobby Jones' legendary golf career to a swift halt. The spot highlighted that despite the fact that syringomyelia, Chiari and their related disorders affect over a million people in the US, alone; more than ALS (Lou Gehrig's disease). But while ALS had its "ice bucket challenge," similar awareness for Chiari and syringomyelia has yet to be sparked. Roberts, NBC Sports and the TOUR Championship hope that the awareness generated from this interview will help raise the funds necessary to get rid of these disorders, for good. Thank you to Jimmy Roberts, NBC Sports, the TOUR Championship and East Lake Golf Club for your support! *Press Release
CSF FUNDED RESEARCH
*We are undertaking the momentus task of putting together the first EVER international patient database that will help to improve research for people with Chiari malformation, syringomyelia and related disorders. Learn more here.
*CSF funded its most recent research colloquium in Boston, MA to discuss co-morbidities that complicate Chiari malformation surgery in October 2014. Watch the lectures here.
*Upon scientific review by experts from the CSF Scientific Education & Advisory Board, CSF was pleased to fund the following 2012-2013 grants:
Through no fault of their own, many medical professionals are only vaguely acquainted with Chiari and the methods by which it is treated. CSF wants to help change this. We have put together an educational program called Consider Chiari. The objective of this campaign is to spark awareness, putting Chiari on the radar of medical professionals. We want people to Consider Chiari.
Are you a medical professional interested in learning more about this Consider Chiari? Maybe you are interested in implementing this educational campaign at your place of work? Contact Cathy Poznik for more information andlearn more about past Consider Chiari events.
The eighth annual CSF Charity Ball will be held on Saturday, March 14, 2015 at the Hilton Garden Inn -- Staten Island, NY. The evening promises to include fabulous cocktails, a delicious dinner, silent auction, and of course, lots and lots of fun gaming!
To see all the fun that was had at the 2014 Charity Ball, visit our Facebook page and view our 2014 Charity Ball photo album! You may also click here for a recap of the evening.
4th annual bobby jones classic for csf
The fourth annual Bobby Jones Classic for CSF will be held on May 17-18, 2015 at world-renowned East Lake Golf Club in Atlanta, Georgia. This exquisite event will include a cocktail reception prior to the tournament, exclusive Bobby Jones tours, an exciting Alexa Stirling putting challenge, a full day of golf at East Lake, all culminating with an awards dinner reception.
On Friday, September 5, 2014, the first annual CSF Cocktails & Couture for a Cure took place at the Chicago Yacht Club from 6-10pm. The evening featured gourmet food, fierce fashion and a chic auction... all for an amazing cause!
You can still download a formal invitation directly from our website here. You are also still able to make a donation to this event if you so choose online or via check. Contact Andrea Grosz for more information on how to do so. Until then... we'll see you next year!
Special thank you to our 2014 sponsors: Excel Displays & Container, the Mikula family, Stryker, John Ruge, MD and Advocate Lutheran General Hospital
The fourth annual Dinner Dance for a Cure took place on Saturday, October 25, 2014 from 6-11:30pm at the Hilton Garden Inn in Twinsburg, OH. The evening included cocktails, dinner, dancing and a silent auction and raffle. To view and download the formal invitation from this event, click here.
Thank you to our 2014 Dinner Dance sponsors: Key Bank, Visiting Nurse Association of Ohio.