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.
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.
The millions of families around the world who are affected by these disorders need us now, more than ever. Our mission to advance research and educate the world about these disorders continues and we are moving forward with all our plans to make a difference!
Bobby Jones CSF, the Bobby Jones Chiari and Syringomyelia Foundation, is a 501(c)(3) non-profit organization (TAX ID NUMER: 26-1316274). In giving today, you will offer hope to the millions of children and adults worldwide who are living with the effects of Chiari malformation, syringomyelia, and related disorders like Ehlers-Danlos syndrome and others.
Consider making a general donation to continue advancing research, educating and empowering families to be their own advocates and improving knowledge among medical professionals.