Finding hope for pediatric patients—on a bike or on foot

In 2016, Stella Hope Freedman was born with lesions on her forehead, which, just two short months into her life, began to spread throughout her body. After seeing multiple doctors and a pediatric dermatologist, Stella was referred to Dana-Farber Cancer Institute, where she was diagnosed with Langerhans cell histiocytosis (LCH), a rare cancer disorder, at just three months old.

“Stella spent the first two years of her life having chemo, checkups, blood work, and lots of poking and prodding,” recalls her grandfather, Arnie Freedman. “Those two years resulted in some developmental challenges, but she’s in remission now and doing much better.”

Barbara Degar, MD, of Dana-Farber, was the first to diagnose Stella and recommended an oncologist in New York City, where Stella and her family lived. After a grueling two years of treatment, Stella was deemed cancer-free, but LCH was never far from the family’s mind, as it can sometimes recur in the teenage years.

Stella’s grandfather Arnie, of Hull, Mass., knew LCH was an orphan disease—a rare disease that received little government funding—and wanted to look out for his granddaughter and other patients to come. After Stella finished treatment, Arnie met with Dr. Degar, Jonathan Paolino, MD, and Barrett Rollins, MD, PhD, Dana-Farber’s Chief Scientific Officer Emeritus and Linde Family Professor of Medicine, to discuss LCH research and how he could help.

“I’m not the type of person to sit idly by; I want to help and be part of the solution,” Arnie says. “Dr. Rollins explained he had done a lot of work with LCH and had a new potential treatment they were just starting preclinical work on that he thought could be curative. I said, well, we want to support you in your efforts and fund your work.”

A 22-year rider in the Pan-Mass Challenge (PMC) presented by the Red Sox Foundation and M&T Bank, Arnie saw an opportunity to expand his fundraising efforts and put them toward a very personal cause: ensuring no other infant or child has to endure the grueling treatment Stella did. His teammates renamed their riding group “Team Stella” and recruited a total of 23 members—friends, family, and colleagues—to ride and fundraise alongside Arnie to support the Stella Hope Fund.

Arnie’s brother-in-law, Ken Willis, was also compelled to add his efforts to Arnie’s goal.

Ken first joined the Boston Marathon® Jimmy Fund Walk presented by Hyundai in 2014, to mark the 10th anniversary of losing his mom to cancer. He and his friend Rob walked together to honor those in their lives facing cancer, and they did well enough to earn an invite to the Jimmy Fund Walk Pacesetter Brunch the following spring. The two brought their 14-year-old daughters as their guests, thinking it would be a nice morning to recognize their one-time efforts to honor Ken’s mom and others. But the girls were so inspired by the speakers and atmosphere that they were immediately hooked: Team Blistering Pace was born. The team has grown to more than 20 members and has participated in the Jimmy Fund Walk every year since, including virtually in 2020 and 2021.

“When Arnie started this project, I wondered if there was a way for our Walk fundraising to also be dedicated to the Stella Hope Fund,” Ken recalls. “It’s been two years now that we’ve had Blistering Pace’s fundraising directed to LCH efforts.  

“Everyone is walking for their own reasons—for people they’ve loved and lost,” Ken continues. “But our team members have been great about supporting the Stella Hope Fund. When we see the mile markers on the Jimmy Fund Walk route with photos of patients, it’s inspiring. It can be hard to walk 26 miles, but when you see those photos and read about the patients, and think about Stella’s experience, the aches and pains of the walk feel like nothing.”

Fundraising for the Stella Hope Fund has become a family affair. Arnie’s wife Lois volunteers for the PMC, his daughter Melissa rides with him, and Ken’s wife Amy and their daughter Juliana help promote the fund and recruit new walkers to Blistering Pace.

In summer 2021, Arnie and Lois hosted an event that featured presentations by Drs. Degar, Paolino, and Rollins, illustrating to Team Stella and Blistering Pace supporters the impact of their efforts. The Freedmans plan to host events this summer and fall to provide updates and further connect Stella Hope Fund supporters to the mission.

“Giving makes you feel good,” Arnie says. “It gives us a lot of gratitude for what we have, rather than focusing on what we don’t, or what we’ve lost.”

“For our kids, it sends a message that it’s good to be involved in your community and give back,” Amy adds. “The Jimmy Fund Walk, PMC, and the Stella Hope Fund have been so influential for Juliana and for our son Daniel, who has also been walking every year since age 10.”

Arnie, Lois, Ken, Amy, and their teams are excited to get back on their routes this year and continue to work toward their $2 million+ fundraising goal for LCH research. So far, they have raised more than $500,000 toward these efforts to fund a “game changing” approach to the disease that changed Stella’s life.

“We’re all dedicated and committed, and the doctors are doing great work,” Arnie says. “This is a children’s disease, and it tends to afflict them when they’re very young. Stella was the catalyst for our family to step up, but this is no longer just about her. It’s about finding a curative medical approach to make sure children in the future who get this disease can have an easier treatment and better life.”

Join Stella’s family in the Pan-Mass Challenge or Jimmy Fund Walk this year. Your efforts help The Dana-Farber Campaign, our ambitious, multi-year fundraising effort to prevent, treat, and defy cancer. The Dana-Farber Campaign will accelerate the Institute’s strategic priorities by supporting revolutionary science, extraordinary care, and exceptional expertise. As a community, we have the power to create a more hopeful, cancer-free future—in Boston and around the world. Together, we can defy cancer at every turn. Learn more about The Dana-Farber Campaign and how you can get involved at DefyCancer.org. Learn more about the Stella Hope Fund at stellahopefund.com.