Lindsay’s Legacy 5K founders reflect on 16 years of impact for cancer research

Bonnie and Frank smile for the camera during a check presentation with Ryan Miller and others.

Lindsay’s Legacy 5K Founders Reflect on 16 Years of Impact for Pediatric Cancer

For the past 16 years, Bonnie MacIver-Mariani and Frank Mariani have poured their hearts into the Lindsay’s Legacy 5K Run, an annual race and fundraiser in Tonawanda, NY. This year, the pair made the difficult decision to hang up their clipboards, marking the conclusion of a 16-year legacy that won’t soon be forgotten.

The Mission Behind Lindsay’s Legacy 5K Run.

Lindsay’s Legacy 5K Run has been a staple in the Buffalo running community since its inception in 2005. For Bonnie and Frank, however, the event went beyond the miles logged and time spent planning. It was their way of honoring and remembering their daughter, Lindsay Rochelle MacIver, while raising funds for the Courage of Carly Fund. The 5K race helps give children with cancer and blood disorders the fighting chance they deserve.

In 2002, Lindsay, 19-years-old at the time, was diagnosed with stage IV alveolar rhabdomyosarcoma, a rare soft tissue sarcoma characterized by tumors that develop from muscle or fibrous tissue. She received the devastating diagnosis shortly after her high school graduation.

“The world changes as soon as you hear the word cancer. It’s a line we never thought we’d cross over. It’s always something we hear about, but it’s never us,” Bonnie said. Until it is.

Lindsay’s cancer was exceptionally rare and typically affects children between the ages of two and six years old. Despite being nineteen, Lindsay’s cancer was classified as pediatric. She valiantly fought through surgery, chemotherapy and radiation for two-and-a-half years with frequent visits to Roswell Park Comprehensive Cancer Center. Sadly, at the young age of 21, Lindsay passed away.

Shortly after her passing, Frank shared this message on CaringBridge, a blog for patients and caregivers: “No matter how it looms before you, experiencing the death of a child remains a painful passage to be followed by a slow process of healing. Bonnie and I, along with Lindsay’s entire family and friends, have begun our journeys to recovery. We do this together with you and privately as individuals.”

A school photo of LIndsay

Bonnie and Frank’s healing journey continues to this day. In the wake of the worst of their grief, however, the couple sought out a way to honor Lindsay’s life and give back to others in similar situations. From that, Lindsay’s Legacy 5K Run was born.

The Girl Behind the Mission.

Those who knew Lindsay describe her as a beautiful soul with a vibrant smile and caring demeanor; someone who lit up the room and “lived every day of her life.” Throughout the course of her cancer journey, Lindsay frequently visited other pediatric patients in her wing at the hospital and did what she could to brighten their day, despite her own struggles.

“There were some other patients that were her age, osteosarcoma and other types of cancer, but most of them were young kids and she loved children,” Bonnie said. “She wanted to spend time with them, drawing, playing, reading, so she’d go down to the craft room. She said, ‘Mom, I want to see them happy. I want to see them smile.’”

Lindsay’s kindness was her biggest strength, right up until the very end. She even became close friends with her “Chemo Angel,” Melissa, whom Frank and Bonnie stay in touch with to this day. A Chemo Angel is a volunteer who signs up to support those fighting a cancer diagnosis. As is typically the case, Melissa was a complete stranger, but she became family. Lindsay’s big heart helped make sure of that.

It is that same warmth that Bonnie and Frank sought to capture 16 years ago when they started Lindsay’s Legacy 5K Run.  Giving back to the Courage of Carly Fund allowed them to fund research and programming for children facing a diagnosis like Lindsay’s. They know, without a doubt, that it’s what Lindsay would have wanted.

A Lasting Impact.

Through the years, Lindsay’s Legacy 5K Run has collectively raised more than $225,000 for the cause.
A few years ago, Bonnie and Frank saw firsthand the impact of their fundraising efforts (and the efforts of their 5K community) when they went on a tour of Roswell Park.

“We got to meet the doctors that were researching rhabdomyosarcoma at Roswell, so that was a pretty cool thing. I was just amazed at everything that they do. They believed in us wanting to help them, and we believed in them and still do,” Frank said.

Of course, it takes a village to bring an annual event like Lindsay’s Legacy 5K Run to fruition. Bonnie and Frank cite the amazing help of their co-director, Fritz, their sponsors, and countless others who helped them navigate the nuances of hosting such a large-scale event. As the pair sunsets the race, they look forward to taking on other endeavors, including finding different ways to give back to Roswell Park and pediatric cancer research.

Buffalo Sabres Induct Ryan Miller into Hall of Fame, Set Up Endowed Fund Benefiting Courage of Carly

Ryan stands in the peds department, greeting fans in front of his tribute wall.

Buffalo Sabres Induct Ryan Miller into Hall of Fame, Set Up Endowed Fund Benefiting Courage of Carly.

If you were in Buffalo in the early 2000s, chances are, you’ve heard of Ryan Miller. Donning the now iconic No. 30, the Sabres goaltender holds the Buffalo Sabres franchise records in games played (540), wins (284) and saves (14,847). Throughout his NHL career, he banked 390 wins overall, earning him 14th place in NHL history, one ahead of fellow Sabres icon Dominik Hasek. He won silver at the U.S. Olympics, snagged himself the Vezina Trophy as the league’s best goaltender and finished his career as the all-time winningest U.S.-born goaltender upon his retirement following the 2020-2021 season.

When Ryan retired from the NHL in 2021, the Sabres released a statement that still rings true today:

“His on-ice performance and dedication to our fans has forever endeared Ryan to the Western New York Community. Through his Steadfast Foundation and numerous charitable events, Ryan consistently displayed a sincere commitment to Buffalo and was the epitome of what it means to be a Buffalo Sabre,” the statement read.

There are few stronger examples of that commitment than that of his dedication to the Courage of Carly Fund.

Courage of Carly’s biggest fan.

For nearly a decade, Ryan supported pediatric patients and their families at Roswell Park through both personal donations and contributions through his non-profit, The Steadfast Foundation, totaling more than $250,000. Inspired by his cousin Matt who lost his battle to leukemia, Ryan took it upon himself to make regular visits to the pediatric clinic where he would read with the kids, share stories and play games.

Luke Gworek, now 17 years old, recalls meeting Ryan on a day he was notified that “there was something wrong.” At seven years old, Luke didn’t yet grasp the ramifications of his leukemia diagnosis, but he knew the situation wasn’t good. As he sat in his hospital room, crying, Ryan walked in. He spent time with Luke, calming him down and reassuring him that he would push through.

“When you’re diagnosed with cancer, you feel very sad and down,” Luke said. “And when someone like Ryan comes along and tells you, ‘You’re going to be fine, you’re going to get through it,’ it really inspires you to keep doing that and get through.”

But Luke’s story doesn’t stop there. Several years after their original meeting, Luke was undergoing treatment at Roswell Park when Ryan walked in — this time for a surprise visit. At the time, Ryan had been traded to a different NHL team and was in town for a visit. When Ryan saw Luke, he instantly remembered their conversation and asked Luke how he was doing. Ryan’s genuine nature and kindness only served to further cement Ryan as one of Luke’s all-time favorite players.

Old picture of Ryan Miller visiting pediatric cancer patients in Buffalo.

Honoring Ryan’s career and kind heart.

January 19, 2023 marked a momentous occasion for Ryan Miller and the Buffalo Sabres franchise. As the Sabres prepared to face off against the New York Islanders, Ryan stood before his fans and watched his signature No. 30 jersey get raised to the rafters and officially retired. The evening celebrated Ryan’s legendary accomplishments and marked his induction into the Buffalo Sabres Hall of Fame.

“When I look up and see Ryan’s number 30 hanging in the rafters, I’m going to remember that he always has a spot for Buffalo in his heart,” Luke said. “He’s a very inspirational person, and he’ll just continue to inspire people even after the NHL.”

True to his dedication to Western New Yorkers, Ryan stopped by Roswell Park for a visit on Friday, January 20, following his honorary night at KeyBank Center. He spent time with pediatric patients and their families and honored the start of a special initiative: the Ryan Miller Legacy Fund.

In recognition of all that Ryan has meant to Roswell Park and the Courage of Carly Fund, an endowed fund has been established, with seed funding from the Buffalo Sabres, to support future pediatric programs for years to come. A wall in the pediatric clinic at Roswell Park was dedicated to Ryan for everything he continues to mean to the thousands of patients, caregivers and staff who are in the fight. 

Donate.

If you want to show your appreciation for Ryan Miller, you can donate to his legacy fund to help the Courage of Carly Fund for generations to come.

Old picture of Ryan Miller visiting pediatric cancer patients in Buffalo.