A Full Circle Moment: Hosting My First Rally for Rare Event in Boston

On Saturday, March 1st, I had the incredible honor of not only attending but also hosting my first Rally for Rare event in Boston, Massachusetts. As the proud mom of a nine-year-old nevus owner, this experience was deeply personal and profoundly meaningful to me.

My journey with Nevus Outreach began shortly after my daughter was born. Her dermatologist introduced us to the organization, which quickly became a lifeline for our family. Navigating the unknowns of a rare condition was overwhelming, but the kindness and reassurance from the Nevus Outreach community provided much-needed support and comfort.

As we focused on our daughter’s health, including the challenges of surgeries and healing, we had to step back from the larger community. Our priority was simply getting through each day. However, over the past year, I felt the pull to reconnect and give back. I wanted to support new families just beginning their journey, just as others had once supported me. This calling led me to officially join Nevus Outreach as a part-time development coordinator—a role that allows me to foster the same sense of connection and hope that helped me years ago.

A Gathering of Support and Community

Hosting the Rally for Rare event was a full-circle moment. It was an opportunity to welcome new families while also meeting, in person, those who had been pillars of support during my daughter's early years. We gathered at Boston Bowl, where eight families, including nevus owners from toddlers to teenagers, came together for an afternoon of connection and camaraderie.

One of the most heartwarming moments was watching the older kids interact with the younger ones. My daughter’s face lit up when she met two teenage girls whose parents had provided me with so much encouragement during her early years. Parents had a chance to share their experiences, exchange advice, and receive the kind of understanding and reassurance that only comes from those who have walked a similar path.

A particularly inspiring discovery was that three teenagers in our group will be attending Camp Discovery, a summer camp hosted by the American Academy of Dermatology (AAD). Hearing their stories about how life-changing the camp had been for them encouraged other parents to consider enrolling their children in the future.

The Power of Community

When faced with a rare disorder, surrounding yourself with a supportive community is essential. Connecting with others who share similar experiences makes the journey feel less isolating. You realize that you are not alone—and that realization is powerful.

More than just providing emotional support, gatherings like these help push awareness, advance research, and most importantly, spread hope. These moments of connection remind us that we are stronger together.

Looking ahead, my goal is to host more of these events throughout the year, no matter how big or small. I know firsthand the fear and uncertainty that comes with an unexpected or misdiagnosed condition. No parent should have to feel that sense of isolation. I am committed to ensuring that, once they find Nevus Outreach, they are met with understanding, resources, and a community ready to embrace them.

The Rally for Rare event in Boston was just the beginning. I look forward to many more gatherings, conversations, and moments of support that reinforce what I have learned on this journey: We are never alone, and together, we can make a difference.

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Would you like to share your story?

Visit: nevus.org/shareyourrare