Celebrate with us for the arrival of NASA's Perseverance Rover on Mars, which carries Alex's name, with a virtual Mars landing fundraising party! After a 12 year diagnostic odyssey, Alex was diagnosed in 2018 with an extremely rare neurological disorder caused by a mutation of the IRF2BPL gene, also known as neurodevelopmental disorder with regression, abnormal movements, loss of speech, and seizures (NEDAMSS). Our mission: To raise funds for the Center for Rare Childhood Disorders so that other cold case families can get another opportunity for a diagnosis. And for Stand by Eli for research, treatments, and therapies for the devastating rare disease IRF2BPL / NEDAMSS.
Donate to TGEN:
Donate to STAND BY ELI: