Building awareness and communities to support and find treatments for Rare Diseases and Genetic Conditions
Many rare diseases, like my own, have hard-to-pronounce names that evoke fear or boredom from people first hearing them. In my experience, eyes glaze over around the middle of “Cerebral Autosomal Dominant Arteriopathy with Subcortical Infarcts and Leukoencephalopathy.” Giving the acronym “CADASIL” for short doesn’t [...]
By ERIC A. HOWALD Of the Keizertimes For Don Whitehouse, riding his bike is like going to church. “I’m by myself, and I’m talking to God and just amazed by the glory of things,” he said. He always enjoyed riding and racing bikes as a [...]
SecureACure4MS© was founded by two passionate MS patients, Sharon and best friend Heather. These intelligent, well versed women are on a mission to find a cure for Multiple Sclerosis. Heather and Sharon share a common thread amongst the pair of them: they both have Multiple [...]
My name is Kimberly and my story begins in 1978. I woke up one morning, unable to move my legs or left arm and unable to get out of bed. At the time, I was only 18 years old. I went to the hospital, was [...]
Organization: Sue & Bill Gross Stem Cell Research Center Submitted by: Sabrina Suarez Stem cell researchers are literally on the brink of developing new treatments for some of the world’s most devastating diseases. Each of us is standing at the intersection of real, tangible progress [...]
My mother Byrda suffers from five autoimmune related diseases including “Systemic Scleroderma“, Morphea, Localized Scleroderma, Raynauds phenomenon, and discoid Lupus. Scleroderma is a connective tissue disease and Mom has been hospitalized many times. She has undergone skin grafts taken from her thighs to place and heal [...]
I get asked all the time why I am so passionate about RARE Disease. I get asked even more why I have volunteered for the last 8 years for rare disease, without pay. Individuals who have not encountered rare disease, or really thought about it [...]
