My Story…
I’m a disabled survivor of the Boston Marathon bombing, with permanent brain injury, hearing loss, neck/low back injuries and severe PTSD. But… What no one realizes is… one of the reasons I got a TBI, when most around me did not, is because I have a rare disease that softens all my tissue: hypermobile Ehlers-Danlos syndrome. It’s hard to believe it’s been a decade since this terrorist attack forever changed the course of my life. I am also celebrating 10 years as a Patient Advocate, volunteering for MANY International organizations, for my 8 RARE DISEASES/CONDITIONS, TBI, Chronic Migraine, Hearing Loss, Dysautonomia, Lyme Disease, and terrorism survivors. This includes annually volunteering, for Global Genes as a patient advocate in your Rare Compassion Program, and for the RDLA, via the Everylife Foundation. Telling my story, as a Featured Speaker on “The Secret To Resilience,” and as a Patient Advocate meeting with Senators, gives my life a greater sense of purpose, and have been a huge part of my resilience and recovery from wheelchair to walking to running the Boston Marathon.