The time of year has come again. Time to raise money for ASAP! My name is Molly Lichtenstein. I am 30 years old. When I was 16, I was diagnosed with Chiari and Syringomyelia after a soccer injury would not heal. Chiari Malformation (Arnold-Chiari) - is a serious neurological disorder where the bottom part of the brain, the cerebellum, descends out of the skull and crowds the spinal cord, putting pressure on both the brain and spine, causing many symptoms. Syringomyelia is a chronic progressive disease in which longitudinal cavities form, a syrinx, in the cervical region of the spinal cord. This characteristically results in wasting of the muscles in the hands and a loss of sensation.
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! From that day on, my life has changed, I have participated in and organized walks for the benefit of Chiari and Syringomyelia since 2009. Last year was INCREDIBLE!! With help from so many people, and despite the challenges that covid threw at us, we had an awesome walk, golf tournament, tennis round robin, and an AMAZING AUCTION! We raised over $50,000!!! WE raised a total of $50,808!!! This is absolutely incredible! Your support humbles me!
Since my first surgery in 2009, I have had 63 brain and spine surgeries, and I have been diagnosed with many other underlying issues: Ehlers- Danlos Syndrome, Hydrocephalus, 4th nerve palsy, and tethered cord syndrome. Every year, for the last 14 years, that number has continued to climb. I want it to STOP at 63 and never get any higher! I know that short sighted with my degenerative issues, but I want to make a difference. When I repeat about it being a tough year, it is not for sympathy, but for education. You see, I was under the impression that I would have surgery and be good as new…That was over 60 surgeries ago. I have learned a lot since then and fight with myself constantly about "my path". "We plan, God laughs!" is a slogan I truly live by. Through "failure" after "failure," I have learned that it is all part of the journey, Part of MY journey. I don't understand the reasons, but I am confident that part of my "grand plan" is to raise money for research and awareness of the illnesses that have taken so much from my family and me. But, the same illnesses have also given me so much. I have learned to stop and smell the "mums," so to speak. I have learned to appreciate 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," which is so true. Everyday routine becomes something I look forward to returning 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 want to make a change! If I can accomplish anything in life, my wish would be to help find a cure, or a much better treatment, for Chiari and its related conditions. 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 challenging, but it has shown me that I can genuinely do ANYTHING with Molly's Army of Angels surrounding me! Thank you for your continued support and love through this crazy thing we call life!
We will hold our walk this year on September 16th, 2023, at Bretton Woods Recreation Center. We have some fun new events-- Camp Chiari Kids featuring colored chalk to add a bit more purple and blue to our lives and a few other fun activities, a ladybug release in honor of or in memory of a loved one (to replace the dove balloon release), an auction, an amazing lunch from the grills mad by none other but Darnestown’s Men’s night group, and much more!
I am passionate about furthering research in Chiari and Syringomyelia, and I look forward to "Walking and Rolling" for a cure! If you have any questions, please don't hesitate to contact me!