Press Releases

March 1, 2021

PATIENTS AND FAMILIES JOIN IN GLOBAL EFFORT TO RAISE $400,000 IN HONOR OF INTERNATIONAL RARE DISEASE DAY

February 28, 2020

PATIENT-FUNDED RESEARCH FOR RARE BRAIN DISORDER AT KENNEDY KRIEGER INSTITUTE REACHES $1.6 MILLION

November 28, 2019

11-Year Old Disease Fighter Joins Global GivingTuesday With a Goal to Cure Rare Brain Disease

February 27, 2017

The Ellie Challenge: Global Effort to Rename Terrible Multi-Syllable Children’s Disease

October 16, 2017

CAN YOU SAY “LEUKOENCEPHALOPATHY WITH BRAINSTEM AND SPINAL CORD INVOLVEMENT AND LACTATE ELEVATION” THREE TIMES FAST? NEITHER CAN THE EIGHT YEAR-OLD GIRL WHO WANTS TO RENAME HER RARE BRAIN DISEASE A CURE FOR ELLIE FOUNDATION LAUNCHES “THE ELLIE CHALLENGE”