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A Message from Tava Wilson, Christina's Mother:
"I don't want others to have to struggle to find knowledgeable medical help, the way we did. This event honors not only the memory of my daughter, but also all individuals currently suffering with POTS, EDS and other forms of Dysautonomia. This day is YOURS."
This fun run/walk will benefit The Dysautonomia Project which is a 501(c)(3) not for profit organization whose mission is to raise educate patients, physicians, and communities on dysautonomia. Dysautonomia involves disorders of the autonomic nervous system, and usually involve abnormal symptoms in many organ systems, including cardiac, gastrointestinal, neurological, and pulmonary, as well as others. Dysautonomia, an invisible illness, may be one of the most misdiagnosed medical conditions of all time. The biggest problem in autonomic medicine today is the lack of knowledge about dysautonomia in communities and with community-based physicians. This effort is personal for me. I am blessed beyond measure to be the mother of Christina Tournant, who voluntarily gave up her fight with POTS/Dysautonomia on March 5th, 2015. Christina loved math, so naturally Pi Day (3/14) was her favorite. Since Pi day falls on a Thursday, we are holding the event the Sunday before (3/10). In high school, Christina won numerous awards, both for athletics and academics. Full of passion for knowledge, Christina was valedictorian of her high school and was accepted to her dream university: The Massachusetts Institute of Technology (MIT), in Cambridge, MA. Throughout these years of achievement, Christina suffered from numerous unusual symptoms and spent MANY hours in the offices of a variety of medical specialists. Christina was finally diagnosed with POTS/Dysautonomia after a friend suggested this as a possibility. Following her diagnosis, we were given misinformation or no information regarding the many symptoms she suffered from or what to expect. Christina was essentially led to believe that she could control this by "thinking positive thoughts." The Doctors did this because they did not know enough about Dysautonomia to be able to educate us, and unfortunately made it seem like it was not a big deal (which was clearly not the case!!). The AWARENESS and better understanding of Dysautonomia by medical professionals is KEY, and Christina's story exemplifies why it is SO URGENT. By spreading awareness about Dysautonomia and helping to fund research and treatment centers, I/we hope to help others who are undiagnosed or misdiagnosed and are suffering. PLEASE help us do this by getting involved in our event. No donation amount is too small:-). -Tava
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