Mondello Park was absolutely hopping yesterday with Fundracer – in aid of The Jay & Ellie Foundation – back at the Kildare venue for its 10th anniversary!
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March 8, 2021 at 2:30pm
Arlington’s Ellie McGinn and her family recently raised nearly half a million dollars to fund research into Ellie’s rare degenerative brain and spinal cord disease.
Ellie, 12, has lived with LBSL (leukoencephalopathy with brain stem and spinal cord involvement and lactate elevation) for the last 10 years. It affects fewer than 100 people worldwide and currently has no cure. Her family has been actively fundraising for a cure since 2013.
This year’s all-virtual efforts in honor of Rare Disease Day on Feb. 28 drew a total of $400,000 in donations from around the world. Last Wednesday, the McGinn family awarded the money to the Moser Center at the Kennedy Krieger Institute in Baltimore, which is currently developing and testing new drug therapies that could lead to a cure for LBSL.