“Stand up to your obstacles and do something about them.
You will find that they haven't half the strength you think they have.”
– Norman Vincent Peale
Chief Executive Officer / Director of Operations
After suffering from severe head/neck pain and cognitive issues for ten years, Michelle was finally diagnosed and decompressed in 2010. It took an additional five years before she was able to get a referral to a geneticist to be diagnosed with Ehlers-Danlos Syndrome, and while she waited, she endured six additional surgeries due to undiagnosed comorbid conditions, as well as an Anterior Cervical Discectomy and Fusion (ACDF). Michelle is a wife, mother of three adult children, and a grandmother of one, and she fights to try and change the fight for Chiarians before a member of her family is diagnosed so that they might have better treatment options.
Connie Wilson Wyatt
Connie was diagnosed in 1999 with Chiari 1.5 and had decompression surgery about a week later. Once home, she developed a pseudomeningocele. After three attempts at draining it, they finally went back in to repair the dura. Connie's other diagnoses include: Rheumatoid Arthritis, Degenerative Disc Disease, neuropathies, etc and she is awaiting genetic testing for EDS. Connie is married with four kids, sixteen grandchildren, and three great-grandchildren; and one son and a grand-daughter also diagnosed with Chiari. Connie fights because she spent eleven years being dismissed before she was finally diagnosed with Chiari 1.5. She wants the fight to change for her family and the rest of the Chiari world so that they don't have to go through all that she's gone through.