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Why We Stand By Eli

The STAND BY ELI Foundation was created to provide funds needed to research, and ultimately treat and cure, children affected with mutations and truncations (shortening) of the IRF2BPL gene. Children who suffer from this nameless disease are born without any symptoms and seem to be growing as typical infants. Somewhere between the ages of 1 and 10 they begin to have loss of motor skills, (the ability to control their muscles). They cannot walk, cannot hold up their heads and become wheelchair bound. They lose the ability to speak or communicate. These children require feeding tubes for eating. Their vision becomes impaired as they lose the ability to control the muscles around their eyes. All have had regression and progressive “Loss of Function” sometime before the age of 10.