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Tuesday, February 4, 2014

Sticklers: NIH/NIA must understand we are people not research numbers.

This is one of the stories in a series of guest blogs featuring patients and families that are impacted by the closure of rare disease research by NIH/NIA. Patients are not satisfied with the response we have received from NIH/NIA. We want to get the message out that closing our research affected people not just numbers in a study. If patients don’t fight for this study who will? 

Kari Ulrich
Rare Disease Advocate
Today my guest blogger shares her experience with Sticklers

Written by: Monica Dunivan

I am currently recovering from my 2 retinal detachment and at the same time my brother is recovering (not too well ) from his 4th retinal detachment. My son and my brother were both born with cleft palate pierre robin syndrone- the birth of my son resulted in the genetic testing that led to the diagnosis of sticklers syndrone. We need to get help- My oldest son is 26 and already blind in one eye and his vision is very poor in his good eye, I do not want him to go blind. My 23 year old needs hearing aides and most days is in pain from arthritis- this is something that is obviously very prevalent in our family and now I have a granddaughter- I would love for her not to have to go thru the same things that we have. Please Help with research!!!

Less than 350 signatures to go! Please share and sign our petition CLICK HERE. Patients will be presenting this petition on Rare Disease Day US in Washington D.C. Feb. 28th!!! 

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