Jessica's 2nd Annual ASAP Syringomyelia and Chiari Walk & Roll for a Cure!
Raising funds for research, education and awareness. Providing support and programs for the CM/SM community since 1988.
|WHAT:Jessica's 2nd Annual ASAP Walk and Roll|
WHEN: August 13, 2017 10:00 am - 2:00 pm
WHERE: Gouverneur Fairgrounds, 85 East Barney St, Gouverneur, NY
Fun For the Whole Family....DJ, Food Truck, Elvis Impersonator, Bake-off Competition Face Painting, Animal Balloons, Mini Petting Zoo, Kid's Games, Raffle, Silent Auction,Door Prize and Craft and Business vendors! Attendees will be able to purchase blue and purple hair extensions and have them professional attached. Come have great fun for a cause!
My name is Jessica Griffith, I am a wife and mother. I was diagnosed with idiopathic Syringomyelia on November 17, 2014, after the sudden onset of weak and heavy legs. Syringmyelia is a rare and incurable spinal cord disease that occurs when a fluid filled cavity called a syrinx, forms within the spinal cord.
Since my initial diagnosis, my disease has progressed ; my syrinx has grown and so has my list of symptoms. This disease affects the muscles and their function in almost my entire body. It affects my mobility so significantly that just 5 months after my diagnosis, I began to use a wheelchair whenever I had to leave the house, if I knew I had to stand or walk for more than a few minutes. I suffer from neurogenic bladder and bowels, spasms and spasticity, tremors, several different types of pain that is indescribable, numbness , loss and decreased sensation including temperature sensation, curvature of the spine, autonomic dysfunction ( shortness of breath, rapid heart rate, low and dropped blood pressure and severe trouble with digestion) and more.
Nobody knows how to cure me. Nobody knows how to fix me. Many treatments for my symptoms have been unsuccessful. And even with treatment, more complications arise. My children have to watch me suffer. My husband, parents and friends have to help me with so much. I struggle with almost everything I try to do. My quality of life is not what it once was and some of my symptoms are life threatening. We need a cure and we need a treatment plan that works. And I pray one day with continued research, we will have just that. Not just for myself, but for all the children, men, women and even canines that suffer from Syringomyelia. We deserve help. We deserve a cure. Our lives matter.