When someone asks me who I am or what I do, I typically default to any combination of journalist, student, writer, intern. However, there is one other title I have earned yet very rarely attach to my name: rare disease patient.
Posted in News | Tagged bargain beaut, Beauty in Diversity, Charity, charity fashion, fibrous dysplasia, freelance whales, howard liebers, IndieMatch, marbleroad, Rare Disease, Rare Disease Day, sarah grothjan, The Yellow Bird Project, yellow bird |
By
nboice on
September 1, 2010
The Global Genes Project Aims to Battle Rare Disease Through The ‘Vote4Hope’ Campaign and Pepsi Refresh Competition Over 15 Million Children in America Are Estimated To Suffer From 7000 Unique Rare Diseases; Children Unite As ‘Ambassadors of Hope’ To Win $250K Pepsi Grant For The Global Genes Fund DANA POINT, CA – September 1, 2010 [...]
Posted in News | Tagged Ataxia Telangiectasia, Autosomal Recessive Polycystic Kidney disease, Batten disease, battens disease, Branchiootorenal Syndrome, Canavan disease, charcot marie tooth syndrome, childrens rare disease network, cystic fibrosis, Dravet Syndrome, Duchenne Muscular Dystrophy, fibrous dysplasia, global genes fund, Global Genes Project, Hutchinson–Gilford Progeria, joubert syndrome, mitochondrial encephalomyopathy, Neimann-Pick Type C, nicole boice, Niemann Pick Type C, NORD, pepsi, Pepsi Refresh, Rare Disease, Rett Syndrome, SMA, Spinal Muscular Atrophy, subcortical band heterotopia, tay-sachs, Tay-Sachs and Type 2 Gaucher’s, vote 4 hope, vote for hope |
2:32 a.m. That’s the time of night (or super early morning) that Billy wakes up. I hope it’s a bad dream from too much Scooby-Doo. I listen to the monitor for a minute or two to see if he’ll fall back to sleep. I count on my fingers – January, February, March. Not long enough. [...]
