Rare Disease Report

ALS Association Covers Medical Bills for Ice Bucket Challenge Creator

JULY 05, 2017
Mathew Shanley
What goes around comes around.
That’s the case for Pete Frates, at least, who saw his creativity and generosity returned to him this week.
The inspiration behind 2014’s “Ice Bucket Challenge” is said to have raised an estimated $220-million globally for Amyotrophic Lateral Sclerosis (ALS) research, some of which helped identify a third gene that causes the disease. What started out as a quirky idea among Frates and his friends evolved into a global phenomenon.
Now, the ALS Association has announced the establishment of the Pete Frates Home Health Initiative, which will aim to financially assist between 3 and 5 ALS patients each year.
More specifically to Frates, though, a donation of $1 million was made to cover a year of his medical bills.
ALS – which is often known as “Lou Gehrig’s Disease” because of how rare it was at the time of the former New York Yankee’s diagnosis – is a classic motor neuron disease. Early symptoms include muscle weakness or stiffness, but as the disease progresses, the capabilities to move, speak, swallow, and breath are quickly lost.
In May, the parents of the former Boston College baseball team captain told the Salem News about the financial burden they faced as their son continued to fight the disease. With medical bills reaching between $80-95,000 each month, it was obvious that another source of help was needed beyond the various campaigns started on sites like GoFundMe.
Frates was diagnosed with ALS in 2012 at age 27, and can no longer move, speak or breathe on his own. He requires around-the-clock care, and was being tended to at his home near Boston before recently being transferred to Massachusetts General Hospital.
Frates original video is shown below:

Other notable Ice Bucket Challenges include participation from U.S. President Donald Trump, and RDR’s own James Radke:

For more on the Ice Bucket Challenge and other awareness campaigns, follow Rare Disease Report on Twitter and Facebook.

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