About
THE AMERICAN SYRINGOMYELIA & CHIARI ALLIANCE PROJECT, INC. (ASAP) IS A NON-PROFIT, 501(C)(3) DONOR-SUPPORTED ORGANIZATION FOUNDED IN 1988 BY BARBARA AND DON WHITE.
ASAP began as a grass roots organization in the White’s spare bedroom due to the frustration they encountered when Barbara was diagnosed with Chiari malformation and syringomyelia. Since then, ASAP has grown tremendously but our fundamental goals of research, education and support remain the same.
MOLLY'S MISSION
When I was 16 years old, I was diagnosed with Chiari & Syringomyelia.
After my first surgery at 16, I realized there was a huge lack of awareness in the medical community and the general public. That needed to be changed! I have participated in and organized walks for the benefit of Chiari and Syringo since 2009.
To date, I've had 60 brain and spine surgeries and have been diagnosed with many other underlying issues: Ehlers- Danlos Syndrome, Hydrocephalus, and 4th nerve palsy, and tethered cord syndrome.
But, the same illnesses have also given me so much. I have learned to stop and smell the roses. I have learned to appreciate the everyday situations. There is another saying that has meant a lot over the years, “you don’t know what you’ve got till it’s gone” and that is so true. Everyday routine becomes something I look forward to getting back to once out of the hospital. Things as simple as getting kisses from my dogs in the morning became what I was most excited about!
I am not spelling this situation out for sympathy, I want to make a change! If I can accomplish one thing in life, my wish would be to help find a cure or a much better treatment for Chiari and its related conditions. I think I have come to realize that throughout my life I will always have setbacks, but as long as I continue to move forward with the help of my family and friends anything is possible! The past year has been tough, but it has shown me that I can truly do ANYTHING with Molly’s Army surrounding me!
Thank you for your continued support and love through this crazy thing we call life!
Molly Lichtenstein