EmesArmy fights the good fight to save Eme’s sight! Emerie, “Eme” (em-E), was born with a rare degenerative retinal disease called LCA (Lebers Congenital Amaurosis) that has already left her blind. She is only 7. She walks with a white cane and is learning Braille.
EmesArmy is fighting to save Eme’s sight by raising money to fund the development of a gene therapy treatment for Eme’s rare form of LCA. Eme’s form of LCA is caused by a rare genetic mutation in her CRB1 genes on chromosome 1. LCA-CRB1 affects an estimated 300 people in the United States. That’s smaller than the population of most schools! It is an “ultra rare” disease that is also referred to as an “orphan disease”.
When kids are diagnosed with LCA, their parents are simply told to go home and learn to raise a blind child because their child will eventually be blind. There is no approved treatment…no surgery…no magic pill. Parents and patients are told that over time, the photoreceptor cells (the light sensing rods & cones) in both of their eyes will simply stop working. There is no pattern to the expected degeneration…no timetable.
In short, Eme’s lights are going out and we have no idea how fast. As she explains it, she “gets a little more blind every day.”
Eme is an inspiration to many as she rock climbs and plays piano and runs around on the playground with less than 5% of “normal vision”. She knows she has LCA and that she is blind and that her vision is going away. Emerie doesn’t let blindness stop her. She has embraced #GrowingUpBlind, but she would love to be able to see. That’s where EmesArmy of supporting soldiers comes in…
Kids started EmesArmy. They came up with small fundraising projects. Kids organized the events. Kids made the flyers. Kids made the fundraising happen. During the first Valentines for Veterans fundraiser in 2012, the army of cookie making elves became known as EmesArmy. The name stuck and over the last 3 years a community of supporters has grown Army Strong and has taken on a life of its own!
Our mission has always been simple: mission|vision
There are SO MANY different ways that you can join EmesArmy and help us with our mission of vision! Join us on social networking, share our posts, organize a walk/run, have a bake sale! A cure for Eme’s LCA is very real. It is very possible. Advances in vision research give EmesArmy a tremendous amount of hope. Every $ raised moves us closer to our mission of vision for Eme and other LCA kids. All proceeds raised by EmesArmy are donated to LCA research.
EmesArmy needs you! Please join our #fight4sight today to #cureEME & #cureLCA