Tammy Lively Thomas
On November 5th I will be running the New York City Marathon to raise money and awareness for the National Organization for Rare Disorders. I will also be running in honor of an amazing young man whom I am very fortunate to parnter with for this cause. Although this will be my 11th marathon, it is my first after being dianosed with Vascular Ehlers Danlos Syndrome. Vascular EDS is an inherited connective tissue disorder that causes aneurysms, arterial disscstions and ruptures, as well as spontaneous organ rupture. I was blessed to have the resources to seek out some of the best doctors at one of the greatest hospitals in the world for diagnosis and treatment. Not all in the rare community have those same resources. Myself and my community parter, Zach, will be doing our part to raise money for NORD's undiagnosed disease program. Zach was diagnosed with Olliers Disease at the age of five. Olliers causes benign bone tumors. For Zach this has meant numerous surgeries throughout his childhood and leaves him at high risk for bone cancer in adulthood. Most patients diagnosed with rare diseases are told there are no FDA approved treatments for their disease. For Zach and myself, the words we hear so frequently from our doctors are "I don't know" and "There is no research". Please support Zach and I in our effort make a difference.
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