Presenter – (In-person)
Ellie White,
MSU Denver, Denver, Colorado.
Abstract
I am Ellie White and I was diagnosed with an ultra rare genetic disorder, Wolfram syndrome, and am helping do clinical trials, research, and funds to raise money and a cure or treatment. this disorder is so rare there are only 200 people known in the world with it although there should be approximately a 700,000 prevalence. this disorder starts with type one diabetes, then vision loss followed by hearing loss not related to the diabetes can occur, followed with a loss in coordination and memory, ending with the inability to breathe. this is a terminal disorder with a life expectancy of about 39 years. i am patient 001 in the first ever two clinical trials for drug safety trials encouraging participation in them so research can go along and treatments can be found faster. help in needed in research at all capacity.