Mitchell is 11 years old. He plays baseball. He wrestles. He golfs too. Mitchell is in 6th grade and is looking forward to middle school next year. He is just like any other kid… except he is blind. He can’t see words on a page… he has no idea what he looks like. But, with the work his parents, doctors and scientists are doing, Mitchell expects to see his face one day… and he is anxious to because as he says: “I hear it’s adorable.”

See Mitchell in his own words:

CRB1 retinal disease is a very rare disease that ultimately causes blindness. There are only 300 children in the US with the most severe CRB1 disease (LCA) and only 8000 total in the world. When a disease is THIS rare, a lot of time and attention goes into getting the word out to the world about it. We need to get the word out to researchers that we have funds for projects. We need to get the word out to doctors that we have a support group for their CRB1 patients. And we need to get the word out to the CRB1 affected families that we have more than hope… we have a plan: treatments and cures for CRB1 retinal disease.

Families and professionals are working to cure this rare disease. Follow our work for all children affected by CRB1 retinal disease at www.crb1.org
Together we can do so much. Together we will #CureCRB1.

 

March is the Month to Share YOUR Story!

Do you or your child have a rare disease? We want to hear your story. This month we celebrate all patients and their families who speak out on behalf of their condition to raise awareness, connect with others and inspire the community. Make sure to share your story with us by writing to us here.

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