A unique hangout space for teens been diagnosed with cancer sits inside the Al Sigl building in Rochester. The 13thirty Cancer Connect organization is the place to meet lifelong friends, express creativity, and have lots of fun.
“Out there, cancer’s what makes you different,” says executive director Lauren Spiker. “In here, everybody gets it.” It all started with a promise that Spiker made to her daughter Melissa more than twenty-five years ago.
Back in 1998, there was nothing that resembled the peer community her daughter needed after receiving a cancer diagnosis as a high school senior. Spiker noticed a gap in services for young people who aren’t pediatric patients and not yet fully independent adults.
Melissa went on to graduate fourth in her class, compete with the synchronized swim team, and visit Germany with friends. But after two years of deferring school and undergoing treatments and a bone marrow transplant, Melissa learned that she had relapsed and exhausted all treatment options.
Despite the news, Melissa insisted on attending nursing school at the University of Pennsylvania. “She had dreamt of it for years,” says Spiker, “and for eight weeks, she was almost a normal college kid.” Three nights before she died, Melissa issued a challenge to her mother. “If you’ve learned anything from me through all of this, do something with it to make a difference, to make things better.”
Spiker says the most powerful thing her daughter taught her was the strength of the human spirit and that nothing, not even cancer, could get in the way of living with purpose. Melissa’s Living Legacy Teen Cancer Foundation was established in 2001.
At first, Spiker invited teenage cancer patients to her home, to sit and talk around the dining room table. “That’s when I saw the magic that happened when teenagers met other teenagers who understood that shared experience in a way that their other friends could not,” Spiker says.
Ten years later, Spiker’s foundation had been recognized by the National Cancer Institute and the Wall Street Journal as an important teen cancer resource. She was able to open a center in Rochester, hire her first employee, and develop programs that included fitness, nutrition, and expressive arts.
But as her members got older, they still needed the program. “Many of these kids who we met as teenagers were now twenty-something year old young adult survivors,” says Spiker. That’s when she decided to include young adults, rebranding in 2015 with a new name to reflect the expanded age group. In 2019, a second branch of 13thirty was opened in Syracuse.
Spiker says the best part is watching the enduring friendships. “When they’re here and cancer is the common denominator, it’s not what makes them different, it’s what everybody shares.”
Several years ago, a new member came to check out 13thirty. Spiker took his parents in another room to chat until one of them said, “Listen, do you hear that? They’re all laughing!” After Spiker explained that there is a lot of laughing here, the parents shared that it was the first time their son had laughed since his diagnosis.
For teens and young adults who are newly diagnosed, the staff is available to hang out with them in the hospital during treatments. They can also connect them with other members that have had the same type of cancer.
A fitness coach holds classes in the full gym upstairs, with the option to modify moves based on lack of stamina or recent surgeries. Teens and young adults can sign up for pottery, ukulele, cooking, and dance. The full kitchen here is the perfect place for nutrition programs including how to make sushi, heart healthy pancakes, and delicious smoothies.
Special events include campouts, trips to Albany to visit lawmakers, midnight canoeing, and sold out comedy shows. Todd Youngman, a local stand-up comedian, meets with the kids for eight weeks as they develop their own comedy sets based on their cancer experience.
When treatment is over, many young people face challenges like being out of sync with old friends. “Being a survivor is not as easy as it sounds,” says Spiker. “It’s not over when it’s over.”
Program manager Michaela Deeg was diagnosed with Hodgkin’s lymphoma when she was fifteen. Introduced to 13thirty Cancer Connect through a play at school, she admits to having zero interest in attending the programs. “I just really wanted to put it behind me. I knew how sad and heavy this was; I didn’t need to sit around and talk to people about that.”
She decided to attend one event before writing it off completely. It was the annual picnic and Deeg’s first time meeting people her own age who had also been diagnosed with Hodgkin’s lymphoma. “There were two girls, both at least a year out of their treatment, and I remember that was such a changing point in everything for me.”
Deeg looks back on that moment fondly. “I realized there is life after this. And you can have all this joy and all these beautiful things after.” She kept coming to events and making friends. “It really gave me a chance to figure out how I balance this new cancer identity. Where does that fit in with who I am and also who I’m becoming?”
As a young adult survivor, Deeg loves working for 13thirty Cancer Connect, whether that’s planning retreats and adrenaline-based adventures or helping members advocate for themselves. “It’s been nice to have had the door held open for me and now I get to hold the door open for someone else.”
The team at 13thirty works hard to keep administrative costs low which allows for 91% of all donations to go directly to the teens and young adults. Local high schools can host fundraisers like Jar Wars or Bald for Bucks and know that they really are making a difference with every dollar raised.
“I love to see teens helping other teens,” says Spiker. “Melissa asked me to do something to make a difference, but I always say to kids, you too can make a difference. You too can make things better. And that feels good.”
To learn more, visit 13thirty.org.
This article originally appeared in the Summer 2026 issue of (585) Kids.
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