JUN 01, 2017 04:01 AM PDT

After Raising Millions, ALS Patient Faces Bankruptcy

Remember the Ice Bucket Challenge? In the summer of 2014, Pete Frates, a former Boston College basketball star, came up with an idea to raise funds and awareness for the neurodegenerative disease Amyotrophic Lateral Sclerosis (ALS) commonly known as Lou Gherig’s Disease. Frates had suffered from ALS since being diagnosed in 2012. Together with family members and BC alumni groups, the Ice Bucket Challenge was created. More than 17 million people filmed themselves dumping buckets of ice water on themselves, posting the videos on social media and challenging friends to do the same. It wasn’t just buckets of water however. Making a donation was part of the social media sharing and in just eight weeks, the challenge raised more than $100 million for the ALS Association.

Two years after the challenge was begun the ALS Association announced that research funded by some of what was raised in 2014 had led to the discovery of a gene, NEK1, that when mutated is responsible for an increased risk of getting ALS.  Project MinE is a database of sequenced genomes that allows researchers to validate clinical findings in their own work.  It includes samples of genetic material. Researchers from the University of Massachusetts had access to Project MinE because of donations from the challenge. Without it, it would not have been possible to verify their findings. The work identifying the NEK1 gene was the third such genetic research study to be made possible by the funds raised during the Ice Bucket Challenge Frates created.

While more research is ongoing and the Ice Bucket Challenge was a boon to awareness and fundraising efforts, what about the creator Pete Frates? He lives north of Boston in Beverly, MA and is cared for at home by family members. His family recently spoke to the media and revealed that his medical bills are bankrupting the family. John Frates, Pete’s father, spoke to CBS affiliate WBZ-TV saying, “Any family would be broke because of this. After 2-and-a-half years of this type of expense, it’s become absolutely unsustainable for us. We can’t afford it. “ Pete requires 24 hour care and the cost for that care is between $85,000 and $95,000 a month. Pete’s wife Julie added that transferring her husband to a nursing facility is not an option, since it would limit the time he could spend with their two-year old daughter.

 

ALS Infographic: What You Need to Know

 

Family friend Rob Griffin, a Boston area philanthropist, and one of the creators of the Ice Bucket Challenge and fundraising campaign, has jumped in again to help Team FrateTrain. He has created the Home Health Care Initiative, with a goal to raise $1 million for families who need assistance paying for care. While it’s a pilot program in the Boston area only at this time, the goal is for it to go national. Griffin told WBZ-TV in an interview, “We hope to start an initiative to help the Frates family and all families that are going through that, and hope it takes off on national basis. We’re trying to kick it off here in Boston.”  Efforts to raise money will begin with an event being planned for June 5, 2017 in Boston. In the meantime, the video below from CBS Boston gives more information on how to help.

Sources: WBZ-TV CBS Boston CNN, ALS Association, Project MinE, Pete Frates.com

About the Author
  • I'm a writer living in the Boston area. My interests include cancer research, cardiology and neuroscience. I want to be part of using the Internet and social media to educate professionals and patients in a collaborative environment.
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