Annual cystinosis awareness event expands

rare disease their eleven year old son knows all too well. tomorrow night — chandler’s chance will be held in georgetown and hosted by the moore family. their son chandler — was diagnosed with the rare metabolic disease cystinosis as an infant. we’re told the annual fundraiser has expanded this year — with a live performance from the band dirt road outlaws. plus — eleven other families dealing with cystinosis in attendance. all of the funds raised — will go toward the cystinosis research network. 14:00:47 if stop and think about it, how often do you hear people talking about cystinosis or any rare disease in general? it just seems like there’s nowhere near enough awareness out there and we just got to keep the momentum going and raise as much as we can 01 before the fundraiser — the family is also hosting the first ever informational session about the disease tomorrow in milton. we’ll have the times and addresses for both the fundraiser and info session on our website — that’s 47abc dot m. coming up after the break – woodbridge is just 1 win away from