As some of you may know, for the last two years I have run the 2015 5k Race along the Mystic River to raise money for Dysautonomia International.
My sister Meghan has spent the past five years battling autonomic nervous system failure, leading to numerous months-long hospitalizations and life-threatening complications. Meghan's dysautonomia is so severe that she depends on IV nutrition through a port in her chest to survive, an extremely risky last-resort option for people who are not able to take in nutrition normally. In 2012, after a severe bout of sepsis, Meghan lost her ability to walk for several months. This was just the beginning of a very long road to becoming stable. Fortunately, Meghan has recovered from this acute bout of sepsis (even walking the 5k with me last year!) and is doing amazing things depsite the incredible challenges she faces. This year we saw Meghan's ability to persevere when she graduated from her Master's degree despite every obstacle placed in her path. She is a force to be reckoned with!
Notwithstanding, Meghan's illness is chronic. There is no cure. Classified as a "rare disease," Dysautonomia funding and subsequent treatment options are scarce. This also means that patients suffer for years without diagnoses and are forced to travel hundreds or even thousands of miles to find doctors that understand the condition. Meghan deserves better. "Rare disease" sufferers, who comprise up to a combined 10% of the population(!), deserve better.
Many in the rare disease community are voiceless without advocacy groups and support organizations to compete with other, more well-known diseases for awareness and research dollars . Fortunately, Dysautonomia patients have Dysautonomia International, a non-profit founded by patients, caregivers, physicians and researchers dedicated to assisting people living with various forms of dysautonomia, ranging from mild to debilitating or even fatal. If you are able, join our cause (or team!) and help us raise money for Dysautonomia International to continue advocating for both research and funding. If you are unable to contribute monetarily, your support is still both recognized and greatly appreciated.
*Proceeds from this event will directly benefit Dysautonomia International in the support of POTS (Postural Orthostatic Tachychardia Syndrome) research. The POTS Walk and 5K Race is dedicated to the memory of Christina Tournant.