Featured Organization Friday: Eme’s Army and CRB1

Emerie, “Eme”, was born with a rare degenerative retinal disease that has already left her blind. She is 5. She walks with a white cane and is learning Braille. She is in Kindergarten at Nokesville Elementary School. Eme’s Army is fighting for her sight and finding a cure for LCA. You may remember Eme and her mom from our Facebook page where they’ve been promoting their “Cookies for a Cause” program for a few weeks.  You can learn more about their very successful Valentine’s for Veterans by clicking on the link here

Photo Credit: EmesArmy.org

Eme’s Army are people who work together with Eme’s Super Mom, Tabitha, to raise money to find a cure for Retinal Blindness through the larger CRB1 Organization.  Here’s what I love most about the CRB1 Orgnaization- it’s a whole bunch of parents that are working to fund the cure their children need by themselves, because nobody was going to help them, and that wasn’t okay.  From the CRB1.org website:

“The CRB1 gene mutation is the second highest incidence (10-13%) of all the LCA genes, yet research on CRB1 is not as advanced as other genes.  We tried asking the larger vision research foundations to take on our project and assist with the funding – we had no luck.  So we figured if we could find enough families willing to work hard to make this happen, we’d be successful.”

I cannot begin to imagine how difficult it would be to learn your child was born with a genetic mutation that would eventually take one of their abilities, and you could do nothing about it! But, I can imagine being a mom that says, not true- I can.

To learn more about Eme and other families fighting to keep the lights on for our children with Lebers Congenital Amaurosis (LCA) visit www.crb1.org or emesarmy.org