Family foundation fights dangerous freshwater amoeba
February 17, 2025
“We consider ourselves well-educated when it comes to matters of health, and still, we had never heard of Naegleria fowleri until it completely changed our lives,” says Debra Moffat. In 2021, she lost her son, Aven, to primary amoebic meningoencephalitis (PAM), an infection caused by a microorganism found in some sources of freshwater, or improperly chlorinated pools.
Dr. Brown receives a check from Aven’s Quest to fund PAM research.
In the aftermath of this tragedy, Debra and her husband, Craig, have worked to combat PAM via their nonprofit: Amazing Aven’s Quest for Amoeba Awareness. Through fundraising efforts and acts of service, their foundation supports research concerning PAM prevention and treatment, while working to embody the hope and resilience that they note as among Aven’s best qualities.
The Moffats have deep ties to UNC. Aven was born at the Children’s Hospital and, later, cared for within it during his treatment for PAM. Aven’s Quest Annual Holiday Drive just completed their fourth year of collecting items for the hospital. To date they have donated over $100,000 in gifts through their holiday drive. The Moffat family feels it is important to pass along the kind of compassion shown to them during those difficult days, to alleviate the burdens of families facing similar struggles.
The Moffats recognize that funding for rare disease research is often difficult to come by. Aven’s Quest is attempting to address this need by leveraging community fundraising and word-of-mouth campaigning to support studies that work to reduce the impact of PAM through detection, education and even novel therapies.
Dr. Joe Brown
This passion for making positive change, and their knowledge of the kinds of research being conducted at Carolina, motivated them to reach out to Joe Brown, PhD, professor of environmental sciences and engineering at the Gillings School. Because much of Brown’s work deals with mitigating the threats posed by waterborne pathogens, the partnership seemed natural.
“More data helps us develop better public health solutions,” Brown notes. “Because PAM is a rare infection, factors like where the pathogen exists, as well as what is aiding its growth and persistence in the environment, remain poorly understood.”
In April 2024, Aven’s Quest committed $330,000 to support Brown’s research in collaboration with UNC’s Water Institute to develop efficient screening methods for N. fowleri, map the pathogen’s presence in North Carolina’s recreational waters, and develop educational interventions that help to inform families about PAM risk and safe swimming practices.
Master’s student Frederik Mendoza Ulken recording flow performance of a pilot pump and filtration setup in the field.
The Gillings School is joining a coalition of leading research institutions, recruited by Aven’s Quest, to attack PAM via a multipronged approach encompassing public health, pharmacological sciences and bioinformatics. The Moffat family hopes that, through these coordinated efforts, they can help end PAM once and for all.
“An important aspect of Aven’s Quest’s work is that it emphasizes communication between the different research teams. With a problem like this one, where there’s still a lot that we don’t know, that’s fundamental.” Brown says.
For the Moffat family, connections are key – both those between leading scientists and those formed by everyone who has been moved by Aven’s story.
“We want to put a name, a face, with the work that the Gillings School is doing to combat PAM,” states Moffat. “We hope that this helps researchers feel that they are working to prevent the suffering that we have experienced because of this disease.”
Contact the UNC Gillings School of Global Public Health communications team at sphcomm@unc.edu.
