Collaboration or Partnership?

I had the opportunity to attend two conferences last month. The first brought me to Lugano, Switzerland, for the ESMO Sarcoma & Rare Cancers Annual Congress. The second took me to Tucson, Arizona, for the Cologuard Classic by Exact Sciences. Both were incredible opportunities, not only to explore new places I had never seen before, but also to spend meaningful time with my team and connect with new people with whom I hope to partner on future projects.

Lugano is stunningly beautiful and deeply reminiscent of my Italian heritage. My grandparents immigrated through Ellis Island at just 18. While they are no longer with us, their warmth, love of family, and tradition – where homemade pasta and holiday cannoli live on – remain a meaningful part of my life. Those memories came rushing back as I arrived, and it felt only fitting that my first dinner included a cannoli and gelato, simple and full of meaning. A perfect start to the week ahead.

As the conference unfolded, the research and progress shared in the sarcoma and rare cancer space were both inspiring and sobering. There is meaningful advancement, yet still so much work to be done. One message stood out consistently: the importance of collaboration with advocacy groups. Nearly every speaker highlighted its value and potential.

At first, I was encouraged. But as the congress progressed, I began to reflect more deeply on what that collaboration truly looks like.

Later in the week, advocacy groups gathered separately, following a parallel track to the main congress. My friend Pan, from the George Pantziarka TP53 Trust in England, delivered a powerful talk, highlighting the distinction between a patient and a patient advocate. Meeting with him to discuss a joint project between our organizations was one of my key objectives during the trip.

After the advocacy presentations, there was opportunity for discussion. As I listened and reflected, I looked at my friend and was compelled to voice something important that had not yet been said – there is a difference between collaboration and partnership.

Both are valuable, but partnership carries a deeper level of commitment with shared responsibility and shared equity. True partnership for LFSA means bringing all voices to the table: clinicians, researchers, scientists, genetic counselors, patients, and advocates to work together toward common priorities. If even one of our partner’s voices is missing, progress slows and time is lost. And ultimately, it is the patients who bear the consequence.

We must move beyond words and into action with partners – ensuring that all those voices are fully included, equally valued, and actively shaping decisions together. True partnership happens when we walk the talk.

Although Pan and I are separated by an ocean, we are bringing our advocacy groups together in partnership for our first project to benefit all individuals affected by Li-Fraumeni syndrome around the world. We hope this is just the beginning of many efforts to improve lives globally.

Because the truth is this: regardless of geography or healthcare system, our patients face the same challenges and barriers. Together, we identified a shared priority, and we are tackling it head-on. Stay tuned, as we will soon need your support in meaningful ways!

I left Lugano energized by the people I met, the research shared, and the possibilities ahead. And while it was hard to leave, I was excited for the next stop: the Cologuard Classic in Tucson.

Exact Sciences (now under Abbott) demonstrated tremendous foresight in expanding their advocacy reach to include groups who work with other cancers in addition to colorectal cancer. With colorectal cancer on the rise globally, including within the LFS community, this broader perspective is both timely and impactful.

It was incredibly valuable to have part of our team attend, participating in workshops, connecting with other advocacy groups, and gathering ideas for our LFSA golf tournament in the fall. Just as importantly, it gave me the chance to deepen relationships with key members of our community, including Liz and Gary Johnston and Nancy and Earl Lesko. Their continued support and inspiration mean more than words can express.

The tournament itself was remarkable. We had the opportunity to share our mission, connect with others, and even partner with professional golfer Rob Labritz, who quickly became our friend. We celebrated alongside Katie Couric, whose advocacy continues to make a profound difference. We cried and were deeply moved by Simone Boseman, who reminded us all how to truly live life fully, using all our gifts, with purpose and gratitude.

It was a full two weeks, but I left feeling even more fulfilled, motivated and energized!

More than ever, I am committed to approaching this work with a stronger vision of what true partnership means, not only within LFSA, but across the broader community. I want to challenge and embolden all of us researchers, funders, donors, clinicians, and advocates, not to settle for the status quo, but to always keep the end in mind.

How can we do better together?


How can we turn research into action more effectively?


How can grants create value for all those invested in them?


How can we ensure that every step we take is aligned with the ultimate goal?

Because at the end of the day, that goal is clear: to make a meaningful difference in the lives of patients.

And that is where true partnership begins.

Because when partnership is real, when every voice is valued and every effort aligned, that is hope in action, and that is how we change lives.