Wear Your Rare
We are a dedicated group of cystinosis families who have teamed together to create ‘Wear your Rare’ a challenge to all of our friends, neighbors, coworkers and families to wear something extremely rare (the funnier the better) and go outside for 17 minutes. During those 17 minutes snap a picture and post it to our Facebook Page. We are asking all who do participate to donate $17 to the Cystinosis Research Foundation to help fund research for this rare disease and please challenge 17 of your friends to do the same. Why 17 of everything? Cystinosis is linked to a mutation or deletion of chromosome 17, many of the patients must take a variety of at least 17 different medications, pills, and creams to maintain health. Also cystinosis patients must take an eye drop every hour they are awake which often equals 17 doses a day! Thank you for your participation in helping us find better ways to treat cystinosis and ultimately find a cure.
Nicole Manz, Jennifer Bartkowski, Clinton Moore and our children, Keegan, Ethan and Chandler