As seen on PR Week

By Diana Bradley

The foundation is encouraging a new generation to take part in the craze for a good cause that swept social media a decade ago.

Ten years ago, Peter Frates, his family and his friends challenged each other to douse themselves with a bucket full of ice water.

They used social media to promote what they called the “Ice Bucket Challenge” and encouraged others to take part with the goal of raising money to finance research into ALS, a progressive neurodegenerative condition also known as Lou Gehrig’s disease.

The challenge went viral, with celebrities and politicians taking part, and raised $220 million to fund research toward finding a cure for ALS. These donations financed a team of physicians who isolated a gene variation present in many ALS patients, according to CBS News.

Frates succumbed to the disease in 2019 at the age of 34. For his role in raising the public’s awareness of ALS, PRWeek named Frates Communicator of the Year in 2015.

The Peter Frates Family Foundation, a nonprofit established to financially assist ALS patients with the enormous financial burden of home healthcare, is commemorating the 10-year anniversary of the Ice Bucket Challenge with a VIP event at Boston’s Fenway Park on August 1.

Members of the Frates family, celebrity guest speakers including former NFL MVP Matt Ryan, members of the Boston Bruins, Boston Red Sox and New England Patriots, as well as ALS researchers and other dignitaries will be there. The event will culminate in a massive Ice Bucket Challenge on the field. Frates played baseball at Boston College, where Ryan played football.

Technology services provider NWN Carousel is sponsoring the effort.

PRWeek sat down with Mike Pitt, executive director of the Peter Frates Family Foundation, and NWN Carousel CMO Andrew Gilman to find out more.

Can you walk me through the plans for August 1 and the message you are getting out there?

Pitt: Nobody can replicate viral. This is more to pay tribute to Pete, to the movement and let everyone know the mission is not complete yet. We will have a speaking program to talk about the impact of the challenge, what Pete and his family did to help change the trajectory of the disease and focus on the path forward. Politicians, sports personalities, local celebrities, ESPN and other media outlets will be there. Hopefully we can get that same kind of momentum we got 10 years ago.

Gilman: We are also creating a video that will play on the big screen at Fenway Park that brings together some of the best ofs and great takes from the 10 years since Pete started this great movement and brings together best wishes from some of the dignitaries that have been around the ALS fight over the past decade. And we will get that out into the PR sphere to engage, inspire and educate about how far we have come and how far we have to go in the fight to beat ALS.

Is your foundation sparking a remix of the challenge?

Pitt: There is no need to reinvent the wheel. We are letting everyone know there has been huge progress in terms of research and drug development and treatment protocols. The unintended consequence of that is ALS is becoming a livable disease, which adds time the patient can spend with their family and loved ones. But it also means there are different costs the families are burdened with. If we can focus on organizations that help those families, that is where we are driving people.

Gilman: We are hoping this sparks the next generation to be inspired by Pete’s story and the organization. We will have kids who participated in the first challenge who are now teens. There are new platforms that exist that didn’t exist 10 years ago, like TikTok. We are trying to share this in a bigger way and get new influencers involved. We need the next generation to step up and use their platforms.

Gilman: During the COVID-19 pandemic, caretakers enjoyed the benefits of taking care of their loved ones with ALS or other diseases. They thrived during the pandemic with flexible work and hybrid work. ALS patients were also able to thrive through remote work technologies and that is what we provide. Last year, the back-to-work mandates became a great lightning rod to raise awareness for adjacent conversations about the caretaker experience. That is how we got involved as a sponsor. We marched on Capitol Hill and raised awareness for making sure employers provided access to technologies to help ALS patients and caretakers.

Can you share any other learnings since the Ice Bucket Challenge launched?

Pitt: The COVID-19 pandemic reaffirmed how powerful connectedness can be. How relationships can perpetuate and change the world. We need to re-embrace that connectedness rather than division. This is a great conduit and will be a great reminder of what simple actions by ordinary people can do.

What PR firms are assisting this?

Gilman: NWN Carousel works with Regan Communications; and Tangled Roots is working with the Peter Frates Family Foundation.