A Weekend of Impact: Nevus Outreach in Boston

What a whirlwind of a weekend in Boston! From powerful discussions at the Rare Disease Global Summit to the emotional and inspiring Light the Night gala, this experience with Nevus Outreach was nothing short of life-changing.

A Seat at the Table: The Rare Disease Global Summit

On Tuesday, Lauren and I had the privilege of attending the Rare Disease Global Summit, hosted by the Boston Globe. It was an incredible gathering of medical experts, industry leaders, and patient advocates, all coming together to discuss groundbreaking research, innovations, and the challenges facing the rare disease community today.

One of the most impactful moments of the day was hearing directly from rare disease patients and their families. One story that particularly struck me was from a sister who lost her little brother to a rare disease at a very young age. These conversations are never easy, but they are necessary. They drive home the urgency of our mission and fuel the passion needed to push progress forward.

During the networking hour, Lauren represented Nevus Outreach with a booth, sparking meaningful conversations with the rare disease research community. In fact, one gentleman came up and shared that he had grown up with Nevus owner Spencer Bacus and how meaningful Spencer’s journey and quest to raise awareness was to him.

The day with the globe ended with a dinner hosted by Scott Harwood at CheckRare, a global learning platform for healthcare professionals and patients. We enjoyed appetizers and visited with our new friends from RareGivers who shared their powerful personal stories and invited us to partner with them in future initiatives (stay tuned!). We also enjoyed the company of Boston-based Jessie Klein from Acadia Pharmaceuticals, and were inspired by her compassion and commitment to patient centricity.

Legislative Wins and Patient Voices at the Rare Disease Day Forum

The momentum from the summit carried us into the Rare Disease Day Forum, hosted by MassBio on February 28. Alexion’s VP of Corporate Affairs Tamar Thompson kicked off the event and the energy in the room was electric. This event featured panel discussions with Massachusetts State Representative Jay Livingston, State Senator Paul Feeney, and Congresswoman Lori Trahan. 

One of the biggest takeaways? 

Massachusetts has now formally recognized Rare Disease Day as a permanent

holiday! Hearing these lawmakers speak about the personal stories that moved them to action was inspiring.

The forum provided a raw and powerful look at the realities of living with a rare disease. We heard from an adult patient from the Fanconi Cancer Foundation who endured years of diagnostic testing before finally receiving a definitive diagnosis. We also listened to the story of parents whose child was born with the ultra-rare disease ZTTK. While balancing full-time jobs and caring for their two-year-old with complex medical needs, they founded the ZTTK SON-Shine Foundation to support other families facing similar challenges. Their resilience and determination were truly inspiring.

Light the Night: A Gala to Remember

Danielle Besteoso, Lauren Isbell, Kristin Nicols

Then came the grand finale—Light the Night, Nevus Outreach’s first-ever fundraising gala. The event was the vision of Kristin Nichols, who spearheaded the idea and worked tirelessly to bring it to life. Alongside Lauren Isbell and me, she dedicated countless hours to making the evening unforgettable. From securing generous sponsors to organizing an impressive silent auction—featuring coveted Boston Celtics and Bruins tickets—every detail was thoughtfully planned and executed to perfection.

Held at the UMass Club on the 32nd floor, the venue offered breathtaking views of the Boston skyline. But it was the speakers who truly stole the show. Amanda Chang, founder of Mark of Love, shared her journey as a nevus owner and how she turned her experience into advocacy. Kristin then took the podium and poured her heart out about the struggles and triumphs of raising a child with a facial nevus. There wasn’t a dry eye in the room as she spoke about the stares, the questions, and the strength it takes to face the world every day.

As a mom to a daughter with a giant cape nevus and hundreds of satellites, I felt every word Kristin said deep in my soul. Most people don’t mean harm when they stare or ask questions, but ignorance can still hurt. This is why we fight so hard for awareness, education, support, and research.

Lauren Isbell, Executive Director at Nevus Outreach, closed the session with a heartfelt speech about her journey as a nevus mom. She also introduced the Collaborative Alliance for Research, Engagement, and Support (C.A.R.E.S.) Network, an innovative initiative aimed at connecting families, clinicians, and researchers. Launching first in Boston, this network of regional hubs will:

• Increase patient participation and amplify research efforts.

• Strengthen the CMN community and drive advocacy initiatives.

• Foster collaboration among healthcare professionals and researchers.

Our ambitious first-year goals include supporting over 20 families, increasing the NOOR  (Nevus Owners Outcomes Registry) enrollment by 30%, expanding research partnerships, and developing a scalable model for national implementation.

By the end of the night, we had raised over $15,000! But more importantly, we left with a renewed sense of purpose and community.

We Rallied for Rare in Boston

The weekend didn’t stop there. The next day, I had the honor of hosting the Boston Rally for Rare event at Boston Bowl. This was a full-circle moment for me—I finally met the first nevus families I connected with through Nevus Outreach 10 years ago. Watching our kids meet and interact was beyond special, but the most incredible moment? My daughter meeting other nevus owners for the very first time.

The past decade has been filled with highs and lows. Those early years were especially hard, but they were also full of profound lessons. My daughter’s journey has taught me to slow down, embrace uncertainty, and focus on what truly matters. More than anything, it has shown me the power of community. Nevus Outreach has been there for me through every stage—shock, uncertainty, surgeries, anger, and joy. This weekend reminded me of just how far we’ve come and how much more we can do.

Now, I have the opportunity to give back—to support new families just starting their journey, to advocate for awareness, and to strengthen connections in the medical and scientific fields. And I get to show Nevus Outreach what the Boston community can do.

This weekend wasn’t just about events—it was about impact, about finding our people, and about pushing forward together. I can’t wait to see what comes next.

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Would you like to share your story?

Visit: nevus.org/shareyourrare