A Powerful Conversation With HEADStrong President Cheryl Colleluori

by Melissa Jacobs

For Cheryl Colleluori, celebrating HEADStrong Foundation’s anniversary is a mixed bag. The foundation’s accomplishments are clear: The Colleluori family grew HEADStrong into a national nonprofit that has raised more than $39 million and supported almost 40,000 families whose loved ones are seeking treatment for cancer.

But long before she was president of HEADStrong, Cheryl Colleluori was a Ridley Township mom. Then, the unimaginable happened: her son Nick, a Hofstra University lacrosse star, died at the age of 21 in 2006 from diffuse large B-cell non-Hodgkin’s lymphoma. And, 20 years ago, the Colleluori family founded HEADStrong to fulfill his wish to help other patients and their families deal with the hardships of cancer treatments.

“Those two milestones are inseparable,” Colleluori said. “The foundation exists because of Nick’s courage, vision, and determination to help others, even during the most difficult time of his life,” she said. “We’re tremendously proud of what has grown from Nick’s dream. At the same time, there isn’t a day that goes by that we don’t wish Nick were here to see it.”

MJ: How do you … celebrate? It sounds wrong to use the word “celebrate” in this context.

CC: Publicly, we’ll be celebrating the impact, the families served, the supporters who have made this mission possible, and the future we’re building together. We want this anniversary year to be a celebration of hope and what can happen when people come together around a purpose bigger than themselves.

Privately, we’ll spend time reflecting on Nick as our son, brother, and friend. We’ll honor the memories that are sacred to our family and remember the young man behind the mission, the one whose motto was ‘Find a Way.’

In many ways, this anniversary isn’t about balancing celebration and remembrance. It’s about recognizing that they exist together. Every family we help, every night of lodging we provide, and every barrier we remove for a cancer patient is a living tribute to Nick’s life. His legacy isn’t something we look back on; it’s something we continue to build every day.

MJ: I first interviewed you in 2015 and it has been inspiring to watch you and your family grow HEADStrong into a nonprofit with an extensive donor base, annual events and crucial alliances in the medical community. What are a few of the business lessons you’ve learned over the past 20 years?

CC: When Nick passed away in 2006, I was a grieving mother, not a nonprofit executive. I never imagined that I would spend the next 20 years learning how to build and lead an organization. In many ways, HEADstrong has grown up alongside me.

One of the biggest lessons I’ve learned is that passion can start something, but it can’t sustain it. In the early years, we said yes to everything because we wanted to help everyone.

Over time, I learned that leadership sometimes means saying no, making difficult decisions, and staying focused on what will create the greatest impact.

Second, don’t be afraid to ask for help. In the early stages of running HEADstrong, my family completed most tasks ourselves through hard work and dedication. Once we transitioned from just trying to stay above water to establishing a sustainable philanthropic model, we began building a team that shared our commitment to the mission and possessed the skills to assist us in increasing our reach and impact.

Another lesson I’ve learned is to have patience. There were many moments when I wanted things to happen faster: a new program, a new Nick’s House, a fundraising goal. What I’ve learned in the long run is that true change and impact take time. Our relationships with our donors, volunteer base, board members, and families over the last 20 years are the reasons we’re still standing today.

MJ: You mentioned growing personally as well as professionally. Can you give me some examples of that personal growth?

CC: Perhaps the most personal lesson is the idea that your sense of purpose and your ability to grieve are not mutually exclusive.

For years, I thought my role was to preserve Nick’s legacy. I now believe that my responsibility is to build upon what he created. Every time we face challenges, every time we take risks, and every time we serve a family has taught me that legacy is not something static, it is something that you shape and grow with every decision.

Twenty years later, I still miss my son every day. But I also have the privilege of seeing the extraordinary good that has come from his vision. I have learned more about resilience, leadership, and faith than any business book could ever tell me.

Perhaps the most important lesson is that leadership is not about having all the answers. It is about staying true to the mission, and having the courage to keep moving forward through uncertainty. Twenty years later, that’s still how we approach every challenge and every opportunity at HEADStrong.

MJ: The death of a child is a unique pain. Many parents think about starting nonprofits to honor of their children. What advice do you have for them?

CC: First, I would tell them to take their time. In the immediate aftermath of losing a child, you’re navigating unimaginable grief. There is no timeline for healing, and they don’t have to turn their loss into a mission right away.

I have to say it is not easy starting a nonprofit. If you feel called to honor your child’s life through a nonprofit, start by asking yourself one simple question: What problem am I trying to solve? Then do your due diligence by identifying an established organization that solves that problem really well and align yourself with that organization. HEADStrong offers  Fighter Funds, which provide families with a strategic and simplified approach to philanthropy, allowing them to make a lasting impact on the cancer community while avoiding the complexities of managing their own foundation.  

I would also tell parents that their child’s life already has meaning. A nonprofit isn’t what creates that legacy. The legacy already exists in the love they gave, the lives they touched, and the values they left behind.

And finally, give yourself grace.  Most importantly, I think grace is a way of honoring your child. Our children would not want us to spend our lives burdened by guilt, self-criticism, or the pressure to be perfect. They would want us to live with purpose and to find joy when we can.

MJ: As you think about the past 20 years, what are a few of the turning points in the history of HEADStrong?

CC: In the beginning, we were a grassroots organization fueled by volunteers and a promise we made to Nick to continue the work he started from his hospital bed. The first turning point was realizing that our mission wasn’t just about raising awareness; it was about removing barriers for patients and families. That shifted everything.

One of our most significant milestones was opening Nick’s House in 2011 and then expanding the program to Swarthmore. We saw firsthand that where a patient lives should never determine whether they can access lifesaving treatment. Providing a home away from home transformed how we serve families and became the cornerstone of our mission.

Another pivotal moment came when we expanded beyond Pennsylvania. Opening Nick’s House Boston proved that our model could be replicated in other communities and meet a growing national need. That gave us the confidence to think beyond one city and begin building a network of Nick’s Houses.

Now we’re thinking even bigger with plans to expand into Durham, North Carolina, serving families receiving care at Duke and UNC. It’s a natural next step in fulfilling the vision Nick had: that no family should have to choose between receiving the best cancer care and being able to afford to get there.

MJ: What are a few of the patient/family stories that have stuck with you through the years?

CC: I get asked a lot about what keeps me motivated year in and year out, and it has always been the families that I’ve been privileged to spend time with. We’ve had many families come through our doors, but there are three that continue to stick with me.

The Knellers from Knoxville, TX  left a lasting impression on me.  When their daughter was born, they were quick to realize something was wrong.  They traveled to Nashville to meet with doctors and soon learned she had retinoblastoma, a rare form of eye cancer. Mom requested that their son be tested,  he, too, had the same cancer. Their best chance for remission was located in Philadelphia, 950 miles from home. Both parents had to stop working and relocated to Philadelphia to save their children’s lives. They were guests at Nick’s House for 7 months during their treatment and both children are in remission. 

Lily Camp and her parents traveled 1,200 miles from a small town outside Dallas to CHOP in Philadelphia. She’d been battling an aggressive cancer since she was under a year old. They had run out of treatment options in Texas and were referred to CHOP.  Nick’s House was their home away from home for Lily and her family. Her dad told me that while it was the most difficult time in their lives, Nick’s House made them relaxed and they had some of their happiest times here. Lily was incredibly joyous, and it was a privilege to be even a small part of her story.

MJ: HEADStrong helps adults too, right?

CC: Yes. Chris York was prepared to borrow $5,000 to provide his wife Elizabeth with some place safe and clean to live while she received treatment in Boston. That would have been on top of medical expenses, and everything else that a cancer diagnosis does to a family financially. They found solace as they stayed at Nick’s House Boston, easing some of the financial burden from the Yorks’ shoulders.

MJ: What’s next for HEADStrong?

CC: That is both exciting and deeply rooted in the promise we made 20 years ago: To ensure that no family has to face cancer alone or be denied access to the best possible care because of geography, circumstance, or income.

One of our biggest priorities is expanding the Nick’s House model to reach more families. We’ve seen firsthand how access to lodging can remove a tremendous burden for patients traveling for treatment, and we’re actively working to establish our next Nick’s House in Durham, North Carolina, serving families receiving care at Duke and UNC. Our vision is to create a network of Nick’s Houses in leading cancer treatment communities.

We’re also focused on strengthening the foundation for the next 20 years. That means investing in our team, growing our donor community, building long-term sustainability, and ensuring we have the resources to meet the increasing demand for our services.

At the same time, we’re continuing to listen to the families we serve. Cancer care is evolving, and so are the needs of patients and caregivers. We want to remain innovative, responsive, and focused on removing barriers wherever they exist.

On a personal level, what’s next is making sure that HEADStrong becomes bigger than any one person. For two decades, this organization has been fueled by Nick’s vision and the passion of so many people who have worked together for HEADStrong. My hope is that the next generation of leaders, supporters, and families will continue to carry that vision forward long after I’m gone.

When Nick started HEADStrong from his hospital bed, I never dreamed we would be where we are today. Nick’s motto of ‘Find a Way’ remains our guiding principle. The next chapter isn’t just about building more houses or growing programs. It’s about finding new ways to bring hope, access, and support to families facing cancer. If the first 20 years were about proving what’s possible, the next 20 are about expanding that impact in ways we could only dream of when this journey began.

For more information, visit HEADStrong Foundation’s website.

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