While the restrictions related to COVID-19 are certainly important to keep us all healthy and safe, they are jeopardizing more than $1.5 million in new research and education for Chiari malformation, syringomyelia and related disorders.

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Bobby Jones once said, “You get good breaks from bad shots and you get bad breaks from good shots… but you have to play the ball where it lies.” We can’t control everything in times like these but, today, we are focusing on what we CAN control.

Here’s some GOOD NEWS! We started the ball rolling on the Chiari Clinical Research Network (CCRN), a network of doctors uniting to develop research studies that will produce an international collection of data about Chiari malformation, syringomyelia and related disorders. The data collected will allow new, innovative research projects to move forward and fundamentally change the way these disorders are diagnosed and treated. LEARN MORE ABOUT THE CCRN HERE.

But the BAD NEWS is, we lost two major fundraising events last year and are hoping to get the momentum going in 2021. The millions of families around the world who are affected by these disorders need us now, more than ever. So while school, work, and fun events might all be canceled right now… HOPE IS NOT! Our mission to advance research and educate the world about these disorders has not been canceled, either. And we fully intend to move forward with all our plans to make a difference!