Turning Pain into Purpose

When Barbie’s daughter first became ill, nothing made sense.

There were symptoms, intense and scary ones, but no answers. Doctor after doctor, appointment after appointment, all while watching her child slip away in ways no parent should have to witness. Barbie was desperate to help her daughter, but everywhere she turned, it felt like no one truly understood.

“I was overwhelmed and scared, and I felt like no one understood what we were going through,” she says.

Then, something changed. She found the Look. Foundation.

“Finding this community gave me hope and helped me feel like I wasn’t alone,” Barbie says. “The resources and support were exactly what we needed to help us on our journey.”

Her daughter’s symptoms, at first, were confusing and frightening. “We were searching for answers and trying to make sense of things that didn’t seem to add up,” she explains. “Once we got the right diagnosis and started treatment, we finally felt like we were on the right path. It was a long, emotional journey, but having support made a huge difference.”

That experience, that storm she walked through, became the very reason Barbie chose to step in and give back.

Today, she’s the Event Coordinator at the Look. Foundation, but to the families who attend events like the Cohasset Triathlon and the Look. Walk, she’s so much more than a logistics lead. She’s the person behind the scenes helping it all run smoothly so that those families can feel seen, supported, and part of something bigger.

“Most of my time is spent working behind the scenes on event logistics,” she says. “I manage registrations, build and design our fundraising pages, process donor information, and help coordinate all the moving parts that go into making an event run smoothly. It’s a mix of organization, communication, and planning, and it’s incredibly rewarding to see it all come together on event day, especially knowing I am helping make a difference.”

Barbie is passionate about the details, but her heart beats strongest for the moments.

“The Look. Walk is definitely the most exciting for me,” she says. “Last year, I was on the walk committee as a volunteer, and this year I’m proud to be stepping into the official role of event coordinator and working alongside the committee again.” One highlight? The Cohasset Triathlon was made even more special because her husband was one of the athletes. “Being part of events that bring our community together and raise awareness is something I’m truly proud of.”

But there’s one moment she’ll never forget.

“The Look. Walk last year was the most powerful experience I’ve had by far,” she says. “I was at the front of the line just as the walk was about to begin, and ‘The Fight Song’ started playing over the speakers. In that moment, I felt the strength and unity of every person standing behind me. We were all there, ready to fight this illness together. It was the moment I realized how deeply I wanted to keep giving back, to help create more moments like that where families feel united, empowered, and not alone in this fight.”

Barbie’s role also comes full circle on the caregiver support calls, the same ones that helped her when she was just beginning this journey.

“At the beginning of my daughter’s illness, when I first joined the caregiver calls, I was just a mom trying to understand what was happening to my child,” she shares. “Those calls gave me support, information, and most importantly, a sense that I wasn’t alone. Now, being part of those same calls from the other side, helping new families feel heard and supported, has been incredibly meaningful.”

And she’s not just seeing change, she’s feeling it.

“The awareness I’ve seen in just the past year has been remarkable,” she says. “More people are learning about this illness, and more voices are joining the conversation. I truly believe the work we do at Look., especially around awareness and advocacy, is helping drive that shift. There’s still a long way to go, but you can feel the momentum building, and that gives me real hope for what’s ahead.”

Barbie’s story is not just one of survival; it’s one of resilience, purpose, and full-circle healing. From the frightened mom searching for answers to the woman leading the charge behind the scenes, she’s proof that even in the hardest moments, hope can take root. And when it does, it grows into action, into community, and something stronger than fear.