Why We're Doing This
Mason Harrell & Rossella Leonardi

We met in Sicily. Mason was stationed there as a Navy physician, and Rossella was home. Life had other plans — beautiful ones. We built a family, and today we have two daughters who are everything to us: Celine, who is 11, and Eleanor, who is 8.

Eleanor came into this world and lit it up. She talks, she walks, she does gymnastics. She goes to Mariposa Elementary — everyone there loves her. There's something about Eleanor that draws people in. She doesn't judge anyone, because that's just not how her mind works. She meets every person with a completely open heart. Kids, teachers, strangers — they all gravitate toward her.

She was also born with a mutation in her EHMT1 gene — a tiny flaw in chromosome 9 that causes something called Kleefstra Syndrome. It's rare. It's genetic. And it means Eleanor lives with autism, intellectual disability, seizures, and sleep disturbances that can make nights brutal for her and for our family.

We've learned to live around it. We're learning to accept ourselves and celebrate the uniqueness and beauty within us, as Eleanor shows us how.

But here's what keeps us up at night.

Kleefstra Syndrome doesn't stay still. As kids with KS move through puberty, many experience severe regression — the skills they worked so hard to build, the words, the connections, the independence — can fade. Extreme apathy sets in. Catatonia. Some lose the ability to communicate. Some lose the ability to function in daily life at all.

We are not willing to let that happen to Eleanor without a fight.

When Eleanor was diagnosed seven years ago, there was essentially nothing. No research infrastructure, no natural history data, no community to speak of. So we built one. Through IDefine — the nonprofit we co-founded — we've spent five years laying the groundwork that serious science requires: a home for KS families at Boston Children's Hospital, cell lines, organoids, and mouse models that allow researchers to study EHMT1 in the lab, and an ongoing natural history study to track how this condition actually progresses over time.

None of that is the cure. But all of it makes the cure possible.

Now we're ready for the next step — the genetic research itself. We're pursuing two paths: one is replacing the faulty gene with a corrected version, and the other is amplifying the healthy copy of the gene that's already there. Both roads lead to the same destination: a treatment that could change the trajectory of Eleanor's life, and the lives of every child with Kleefstra Syndrome.

Every dollar raised at this concert goes directly to that research.

Please come join us — for one incredible evening of music, community, and purpose — and help us get one step closer to a finish line that is well-deserved.

Thank you for joining us.

Mason & Rossella

**Corporate Sponsorship Opportunities still available: Click Here

I Love Someone Rare Benefit Concert

⚠️ Attention ⚠️ Venue changed to 👉 GLENN WALLICHS THEATER at UofR❗ Map 📍 Link 🔗 Below.

Team Members