Onbrand

I am a mother and a patient who found a new purpose as a passionate advocate and volunteer for the Bobby Jones Chiari and Syringomyelia Foundation. The Bobby Jones CSF has a mission to advance knowledge through research and educate the medical allied sciences, and lay community about Chiari, Syringomyelia, and related complex medical diagnoses. After my 10-year fight for diagnosis, suffering setback after setback, I was diagnosed with Ehlers-Danlos Syndrome and Chiari Malformation. Months later, both of her sons were diagnosed as well. After 41 surgeries, I know firsthand the pain of being misunderstood by the medical system and the strength it takes to keep fighting. Today, I use what I have learned to help other families to trust their instincts, push for answers, and never apologize for advocating for their children. I discovered the importance of patient advocates for rare diseases because we don't get the funding that others do. The funding and research is so necessary for our rare disease comes through non-profit organizations like Bobby Jones CSF.

I discovered the Bobby Jones CSF in 2010 and the organization quickly became a second family. For the last 10 years I have been a walk chair and have seen the walk grow and evolve every single year. I have spent countless hours working to educate and guide other individuals and families suffering from similar circumstances. I'm an active member in support groups and will try to provide support to anyone who needs it.
I believe that while chronic illness may shape your story, it does not define your worth or limit your impact. I continue to navigate my complicated health as well as my two sons and live by the quote, "It's hard to beat a person who never gives up.”