By Alicia Rowell, Vice President
In 2010, Valerie Guild and Susan Steel were introduced. They were two determined women who had founded non-profits to advance the battle against melanoma and accelerate the quest for the cure. Val’s drive came from her daughter Charlie’s death from melanoma at 26 years old. Susan’s came from her own battle with melanoma—one she lost in 2016.
Susan named her foundation Skin of Steel (SOS) and initially focused on sun safety education and bringing clinical trials in melanoma to the greater Chicago area. But after meeting Val, she decided to devote SOS’s fundraising efforts to AIM’s principal research initiative, the International Melanoma Tissue Bank Consortium—IMTBC for short. IMTBC is collecting 500 fresh frozen primary melanoma tumors and the corresponding depersonalized patient data for each into a shared repository for collaborative research among six institutions—four in the U.S. and two in Australia—as well as for other researchers who apply to use the tissue.
Other research institutions have tissue banks for melanoma, mostly with metastasized tumors. But no bank is so widely collaborative AND has a critical mass of fresh frozen primary tumors AND depersonalized data.
But this story is not about Susan, Val, or even the IMTBC. It’s about what young people can do when they set their minds to it. It’s about how important peer messaging is for skin cancer prevention. It’s about creative fundraising that is FUN. It’s about the Junior Auxiliary of Skin of Steel.
Founded originally in 2010, the Junior Auxiliary of SOS comprises high school students from the North Shore of Chicago whose families have been affected by melanoma or who just have an interest in skin cancer prevention. The 2010 group didn’t take hold, but once revived in 2016, the JA has successfully existed for five years even as members have graduated and even through COVID. Members have come from New Trier, Regina Dominican, Loyola, and other local schools.
Founding member (2016) Grace Sullivan is now a college student at the University of Kansas, but she was involved because her dad is Board Chair of SOS and her Uncle Danny died of melanoma. “We really wanted to make a difference, given that so many of us had family members affected by cancer—especially by melanoma. Being involved with the Junior Auxiliary was one of the most meaningful things I did in high school that truly parlayed into my college experience.”
Along with Grace, Vivienne O’Bryan and Charlotte Lane are also 2016 founding members who have moved on to college, and they’ve passed the torch to new, younger members. In fact, this year’s group includes three teens who are each the third of their siblings in the organization.
Margaret Sullivan is Grace’s youngest sister and another niece of their late Uncle Danny. His funeral was on her sixth birthday. Their family is very close, and she says that after her uncle died, “we wanted to educate ourselves and also raise awareness about the dangers of skin cancer.”
The JA is a perfect vehicle to educate her fellow young adults. “For a serious topic, it’s easier for young people to listen if they can relate,” Margaret says, explaining why those who have a family connection to melanoma are more receptive to their messaging. “But even if they can’t relate, they will listen to their friends.” She thinks peers have more influence with each other than adults on some topics, such as wearing sunscreen: “If your friends are wearing sunscreen, you consider it.”
Trevor Byrnes, a sophomore whose mother is a melanoma survivor and the SOS Executive Director, agrees: “Kids listen to peers and friends more than teachers and parents.”
Trevor also has a personal connection to the work of the board, given his mom’s experience. He was just a baby when she went through treatment, and only five or six years ago came to realize how serious her situation had been. “Honestly, I realized it, even more, when I joined the JA,” he says.
Charlotte O’Bryan doesn’t have a family member with melanoma, but her mother works with people who have cancer, and something her mother has told her about those cancer patients has really stuck with her: They didn’t see it coming. This fact spurs her prevention work with the JA.
“Most melanoma can be prevented,” she says, “in fact easily prevented, and that’s why education is so important.”
Trevor agrees and notes that “nothing is 100% preventable, but there are ways to prevent melanoma, and that’s why it’s really important to practice sun safety at a young age.”
“Wear your sunscreen!” Charlotte adds, emphatically.
The Junior Auxiliary’s goals are two-fold: to raise awareness of melanoma and to raise funds for melanoma research. On the awareness front, the group is particularly focused on making sure their peers understand that their UV exposure now will affect them in the future. “The vast majority of melanomas are caused by UV exposure from the sun or indoor tanning devices, often years before the melanoma appears. In fact, one blistering sunburn in childhood or adolescence more than doubles your chances of developing melanoma later in life,” says Trevor. “We can spread those messages among our peers more easily than adults can.”
But the group really excels at raising funds. The Junior Auxiliary’s 2020 annual fundraiser was, like most things last year, cancelled. But this year, on Sunday, May 23, the 5th Annual Spin of Steel will roll on. The event is an afternoon-long series of spin classes that raises funds while providing the riders exercise, education, and a good time. Those who attend will spin in one of the 45 minute-long classes to help the JA and when they’re not spinning, they’ll enjoy the party atmosphere. The Studio Spin site on Skokie Blvd in Highland Park, IL, will be rocking on May 23, with lights, loud music, and video screens showing competitions among spinners. Margaret summarizes the event this way: “Spread awareness and have fun doing it!”
The amazing part is that through the past four years of the Spin event, this small group of young people has raised a whopping $75,000 for the IMTBC.
This group of high schoolers knows how important research is to finding the cure and also knows research needs to be funded. The JA has already raised more than enough funds for a specialized freezer to store these tissues at one of the sites. And every $2500 raised at this year’s event will fund the collection, annotation, and freezing of one primary tumor tissue and the accompanying data.
AIM at Melanoma is grateful for the Junior Auxiliary’s support, just as we are grateful for the years of partnership with SOS. Both Susan and Val have passed away, but their legacies live on in events such as Spin of Steel. They would both be so proud to see this event and its growth.
Please note: You do not have to live in Chicago’s North Shore to help the JA of SOS raise funds! At Studio Spin on May 23, teens and adults ride for $50. Get on your bike or attend your own spin class wherever you live on May 23—or any day that week—and donate your “fee” to the JA of SOS here or to AIM, in honor of the JA.
P.S. from Margaret: “Please donate and sign up!”