‘This Is About Family’: Nancy Frates On ALS And Moving Forward

The ALS Ice Bucket Challenge, popularized by Pete Frates, BC ’07, went viral on the Internet soon after its conception in 2014. Videos of celebrities, students, and families pouring buckets of ice water over themselves cluttered Facebook, Instagram, and Twitter feeds.

On Thursday, the Undergraduate Government of Boston College’s Council for Students with Disabilities hosted Nancy Frates and her son, Pete, an ALS patient, and the former captain of the BC baseball team.

The Ice Bucket Challenge, which first gained prominence in August of 2014, was a social media phenomenon meant to raise awareness and funds for Amyotrophic Lateral Sclerosis (ALS), more commonly known as Lou Gehrig’s disease, a debilitating and ultimately fatal condition. Frates and her family became involved in ALS advocacy in 2012 after Pete’s diagnosis.

Speaking in front of a crowd of over 100 students at the Yawkey Center, Frates began her story by discussing her history at BC.

“This is a story about family,” she said, referring both to her immediate family, and the communities like BC that had given her family support as they tried to raise money and awareness about ALS. Frates and her husband were both graduates of BC’s class of 1980.

“Every day we wake up and choose to live in positivity.”

During his time at BC, Pete made a name for himself as the captain of the baseball team, and the MVP of the 2006 Beanpot. After he graduated, he moved to Germany to compete in the German Baseball League, but returned to Boston a few years later. It was during his time back in the U.S., while competing in Boston’s Intercity League, that Pete would be diagnosed with ALS at age 27.

After a check up for what seemed to be a routine wrist injury, Frates’ test results indicated he had ALS. Nancy Frates described the shock and terror she felt upon hearing the diagnoses, recalling her own diagnoses of cancer early in her life. She noted, however, that while she had been presented with two possible treatment options, her son’s doctors had no cure and no treatment, only the information that most ALS patients survived about 3 to 5 years after diagnosis.

“We’re going to look forward,” she recalled Pete saying after the diagnosis. “What a chance we’ve been given to change the world.”

Frates said the family immediately began thinking of ways to put ALS in front of a mainstream audience to raise money and awareness. As business majors, they began to think of ways of effectively branding and marketing ALS awareness. Shortly after Pete’s diagnosis, they founded Team FrateTrain, a community dedicated to promoting ALS awareness and fundraising.

Frates said that the idea for the Ice Bucket Challenge first came about in August of 2014 from Pete’s friend Pat Quinn. another ALS survivor from New York that had reached out to Pete after hearing his story. Quinn had seen an Ice Bucket Challenge video on the Internet, and thought this might be the way to bring ALS in front of a mainstream audience.

The challenge started locally, and Frates noted that BC was among the first communities to participate in the challenge. With the help of emails sent by Pete, the ALS Ice Bucket Challenge went viral, with celebrities like Bill Gates, Jack Black, Katy Perry, Drake, Mark Zuckerberg, Taylor Swift, and Lebron James participating. Atlanta Falcons quarterback Matt Ryan, a classmate and friend of Pete’s, was among the first to take the challenge.

The popularity of the Ice Bucket Challenge spurred local, national, and eventually international media coverage. The response, Frates said, was enormous. In total, over 17 million videos were uploaded to Facebook, and these videos were viewed over 10 billion times by 440 million unique users. The Frates also said that the financial benefit to ALS charities was massive. In only six weeks time, over $220 million were raised for ALS research and treatment, including money from 2.4 million new donors.

The awareness raised was also significant, with Google reporting that “ALS” was the number one searched topic in their “what is” category for 2014, and “ALS IBC” was the sixth most popular search of 2014. ALS also reached a global audience that year, with Ice Bucket Challenge videos being uploaded from 150 different countries, according to statistics from YouTube.

Frates said the challenge also had a major impact on the progress toward a cure, citing higher rates of early diagnosis, increased interest in the field, and greater collaborations between professionals studying the disease.

Toward the end of the talk, Frates was joined onstage by Pete, who is currently paralyzed, unable to speak, and confined to a wheelchair. With her son, she relayed some of the lessons she and her family had learned throughout out the course of Pete’s battle with ALS, including the generous nature of people, the importance of being surrounded by a supporting community, and that great leaders are those that bring out the best in those around them. She stated, however, that the most important lesson had been her family’s commitment to keeping a good outlook.

“Every day we wake up and choose to live in positivity,” she said.

Featured Image by Josh Metzner / Heights Staff

November 12, 2015