Project Alive Gala to Spotlight Hunter Syndrome

For Anne and Jeff Denneen, the first sign that something might be wrong with their son, Liam, seemed relatively minor.

After his first birthday, Liam had a persistent runny nose that the family initially attributed to severe allergies. The problem continued despite antihistamines and nasal sprays, and by age 2, doctors discovered that his adenoids were significantly enlarged.

It was during surgery to remove them when Liam was almost 2 1/2, that the Denneens first realized they might be facing something much more serious. The surgeon told them Liam’s tonsils were also enlarged. More concerning, the medical team had experienced unusual difficulty intubating him and noticed craniofacial abnormalities.

The ENT asked a question the Denneens hadn’t expected: Had Liam ever seen a geneticist?

“The weeks following surgery were horrible as we waited to get an appointment with genetics,” the family recalled.

In February 2013, Liam was diagnosed with Hunter Syndrome, also known as MPS II, a rare genetic disorder that causes progressive damage throughout the body. The Denneens were told there was no cure and that their son likely would not live beyond his late teens.

“We couldn’t accept that part and dived into the research,” they said.

Today, Liam is 16 and a tenth grader at North Springs High School, where he participates in community-based instruction programming.

The Denneens have deep roots in Atlanta’s Jewish community. Anne is the daughter of Dr. Leslie and Marilyn Kelman, who have been part of the community for 50 years, and Anne once worked in advertising sales for the Atlanta Jewish Times. The family belongs to Temple Emanu-El. Daughters Darcy and Rachel attended The Davis Academy and The Weber School, while Liam attended Schiff Preschool and the Diamond Family Religious School at Temple Emanu-El. He also spends his summers at the Marcus Jewish Community Center of Atlanta’s Camp Alterman through its inclusion program.

Soon after Liam’s diagnosis, the family chose to pursue a bone marrow transplant in hopes of slowing the disease’s impact. His sister, Darcy, was his donor, and Liam spent a year in isolation recovering.

Afterward, he returned enthusiastically to school, sports, friends and family. But as he grew older, the effects of Hunter Syndrome became increasingly apparent.

Life, the family said, became about adaptation.

“Adaptive learning, adaptive sports, adaptive clothing, adaptive communication, adaptive traveling,” they said.

Liam can walk, but longer distances cause pain. He can speak, although his words are not always meaningful to others. He uses hearing aids and needs to be close to hear someone speaking. He continues to learn, but he also loses some of what he has learned.

Yet, there is another side of Liam that his family says the disease has never changed.

“One thing that hasn’t changed is Liam’s enormous and contagious smile and great sense of humor,” they said. “He has the best laugh, and even if you have no idea what he is talking about, he will get you laughing along, too.”

For years, the Denneens found it difficult to connect with other families affected by Hunter Syndrome. Seeing the disease’s progression in other children felt too frightening and too close to their own experience.

Eventually, however, they realized how much they needed people who truly understood their lives. Anne began attending conferences organized by Project Alive, a national nonprofit dedicated to finding a cure for Hunter Syndrome through research and advocacy while providing resources and education to affected families. She and Jeff joined Project Alive’s board of directors in January 2025. Their daughters also began volunteering, and Darcy became the family support coordinator for the organization’s Hunter Health program in October 2025.

Project Alive launched Hunter Health last year to help families manage the complicated realities of caring for someone with Hunter Syndrome. Families are paired with a dedicated coordinator who can help organize medical appointments, navigate insurance and appeals, locate specialists and connect families with resources.

The organization will raise money to expand that work at its annual Cure Within Reach Gala on Saturday, Nov. 14, at the Georgia Aquarium. The event will include dinner, live music and live and silent auctions.

Proceeds will support Project Alive’s work to improve access to care and treatments, assist families and advance progress in Hunter Syndrome research.

The gala comes during a significant year for the Hunter Syndrome community. In March, the FDA granted accelerated approval to AVLAYAH, the first new FDA-approved Hunter Syndrome treatment in nearly 20 years and the first designed to address neurological disease by crossing the blood-brain barrier. Still, treatments cannot reverse damage that has already occurred, and Hunter Syndrome remains without a cure.

For the Denneens, that makes continued research deeply personal.

“We have always hoped for a cure,” they said. “But even if a cure can’t reverse damage that has been done, we hope for treatments that can preserve a meaningful life for Liam.”

Meanwhile, Liam continues to leave his mark on the community that has watched him grow up. His family says he is regularly recognized at grocery stores and restaurants by people whose lives he has touched. He loves his teachers and counselors, his former Schiff classmates, First Responders and even the staff at Los Rancheros who let him “pay” for his own meal.

“He greets everyone with a smile and a comment,” his family said, “and if you walk with him, you will most certainly find a hand to hold onto.”

For a family that once faced an unimaginable diagnosis largely on its own, those connections have become part of Liam’s story, as has the hope that continued research may change the story for families who come after them.

The Project Alive Cure Within Reach Gala will be held from 6 p.m. to 10:30 p.m., Nov. 14, in the Oceans Ballroom at the Georgia Aquarium. Tickets and additional information are available through Project Alive.