I had the privilege of attending a recent Boston Young Healthcare Professionals’ “Patient Advocacy 101” event on behalf of the healthcare practice at PAN.

At the event, audience members had the opportunity to network with one another bright and early and attend a keynote presentation by Andrew Frates, brother of Pete Frates. Former captain of the Boston College baseball team and professional baseball player in Europe, Andrew’s brother Pete was diagnosed with ALS at the age of 27. Since Pete’s diagnosis in 2012, his family has played an active role alongside Pete and his wife Julie in raising funds and awareness around ALS research. Although the main event was a panel discussion with a variety of perspectives on patient advocacy and advancements in rare disease research, the amount of people that gathered beforehand to hear Pete’s powerful story – some not for the first – was inspiring to say the very least.

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Today, the effects of ALS on a patient’s nervous system are more defined and understood. Like many diseases, however, there is still no cure for the 20,000 Americans who have been diagnosed (plus the many more that exhibit symptoms but may not have completed their diagnosis journey). Pete’s narrative is just one of many. Much like our responsibility to tell client stories that further their stake within the industry, his family’s passion for telling his story to help other patients hits close to home.

Pete Frates’ name will also forever be synonymous with the Ice Bucket Challenge, a viral philanthropic sensation. It’s hard to believe that the Frates family kick-started this campaign more than four years ago. Yet, with the influence of celebrities and prominent figures, it continues to make ripples. In 2014 alone, $100 million in donations poured in from July 29 to August 29. In September 2017, Pete’s book “The Ice Bucket Challenge: Pete Frates and the Fight Against ALS” was released, providing more context around the 2014 campaign (and thus, raising more money toward finding a cure for ALS).

The Ice Bucket Challenge is a prime example of how patient advocacy doesn’t begin and end with one successful campaign. It takes demanding work and creative thinking to keep the momentum and excitement around a worthy cause alive. There is often a misconception that only new ideas are creative, however, creativity also means building off of a proven idea and adapting the concept to be equally successful. For example, a new viral challenge, “The ALS Pepper Challenge,” recently cropped up asking people to eat a hot pepper or donate $100 to ALS research (or both). This challenge, supported by the Frates’ family, reinvigorated interest in the Ice Bucket Challenge and in turn continues to fundraise for ALS research.

Events are also a wonderful way to advocate for a patient community. For example, “Pints 4 Pete” was launched by the Frates’ family in 2017. The event reached young people by providing purpose around a Saturday night out with friends. The integration of well-known public figures in the community also created vibrancy, hope and excitement around what is often thought of as a tragic diagnosis.

As PR professionals, who often working alongside patient advocates, consider the following:

• Awareness is a constant: In healthcare and patient advocacy, generating awareness is a staple of every campaign even if the disease may be well-known.
• Creativity is fluid: What drives new audience members to an event or campaign changes over time. Responding to this change is crucial!
• Critical thinking is a must: Analyzing past campaigns to understand what worked and what didn’t is essential. So is thinking outside the box but no need to re-invent the wheel if a concept works.

Staying true to these principles and building a community of followers, donors and supporters, the Frates family effort has continued to evolve as figures in the patient advocacy community and advancements in ALS research have grown tremendously since Pete’s diagnosis. The family has invested in everything from products – Pete Frates-branded baseball bats and Boston College ALS blazers – to events including Pints 4 Pete and others, such as Plunge 4 Pete, a chilly January dip into the ocean in Gloucester, MA.

Above all, Pete Frates’ story, along with many others, teaches professionals that patient advocacy campaigns aren’t possible without the raw power of storytelling. Pete and his circle have succeeded in personalizing ALS and putting a face to the fight against the life-altering disease.

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