MI’s Hawkins family raising funds for rare disease research

Published 2:08 pm Friday, May 1, 2026

Mercer Islander Jill Hawkins said her family’s nonprofit research fund has made some nice progress over the last five years while focusing on an ultra rare genetic disorder called FAM177A1.

Two of the Hawkins children, Cooper, 15, and Charlotte, 20, have the disorder — which causes intellectual disability, autism, epilepsy and more — and the foundation has raised $930,000 to date to recruit top-notch researchers to work on the gene and disorder as they’re driven to ultimately find a cure.

The family is aware of a handful of patients in the United States and a couple dozen worldwide who are faced with the disease, according to a previous Reporter article. They aim to unite the patient community through the foundation as the research continues.

“We know that the technology exists to create life-transformative treatments for this disorder. And we have invested in a gene — it’s called an AAV9 gene replacement therapy,” Jill said. “The main objectives (are) just understanding why this gene is so critically important for health — what it does, just the basic biology of it. And then if not more importantly, research to translate that basic understanding of the gene into treatments that can really impact patients.”

To generate interest in the research, Jill has attended conferences and networked to attract some of the “brightest minds out there” who attend the events that are hosted by people in biotech and who are involved in rare disease drug development. Jill and others learn from the hosts and scientists while pushing their initiatives ahead.

“It falls on families to drive this research. Our kids are sick, and if we don’t do it, unfortunately nobody else will do it,” she said. Presently, their research is being done at Yale University, UCLA, Washington University in St. Louis, The University of Utah, University of Portsmouth in England and The Hebrew University of Jerusalem in Israel.

Community support

One of the Hawkins’ local advisers is Mercer Island resident Mark Frohlich, who is a medical oncologist and CEO of the biotechnology company Indapta Therapeutics.

Frohlich said that Jill’s founding and leadership of the FAM177A1 Research Fund has been truly remarkable.

“She has pioneered the identification of the underlying mutation for her children’s disease, established collaborations with scientists at several institutions, worked to develop several animal models, identified drugs to test in children with the disease, and embarked on the development of a promising gene therapy,” he said.

Speaking of Islanders, Jill said that generous residents have donated the majority of the funds to their foundation. The foundation has held two FAM JAM fundraising galas with a third on the way on May 29 at SoDo Park in Seattle. Four years ago, they hosted a joint awareness and fundraising Rare Soiree event with Islander Effie Parks, whose son, Ford, has a rare disease called CTNNB1 syndrome that causes global developmental delays.

Regarding the FAM JAMs, Jill said, “It’s really turned into this incredible community event.”

Jill noted that a plethora of Island businesses are supporting the foundation at the FAM JAM, including Terra Bella with an auction basket and Metropolitan Market with several desserts. The giving goes on and on, Jill added.

“The generosity and the caring of this community — it keeps us buoyed right? It just keeps us going and we’re so appreciative,” she said. “Knowing that we have the support and love of our community gets us through the tough days and keeps us going despite all the challenges.”

Friend and supporter Hilary Benson shared her thoughts about the Hawkins family: “All of us who know and love the Hawkins are in constant awe of their dedication, both to their family and this broader cause of rare disease research. It’s humbling and truly an honor to support them however we can.”

Another crucial step for the foundation was having Charlotte and Cooper named as patients one and two (out of five) in a paper published in the journal of Genetics in Medicine by a team at Stanford University — which is part of the Undiagnosed Diseases Network — that put their disorder on the medical map.

Currently, Mercer Island High School (MIHS) graduate Charlotte is being served in the school district’s Pathways program and is working at Walgreens. Cooper is a freshman at MIHS and is engaged in a highly-supported program with one-on-one assistance.

In a special upcoming Mother’s Day weekend, the whole family — including Jill’s husband, Doug, and their son Nash, 22 — will be traveling to Los Angeles to meet another family that has two girls with the FAM177A1 disorder. It will be the first time they’ll connect with someone with the disorder in real life.

“I can’t think of a better way to spend (Mother’s Day),” said Jill, adding that she and Doug were heading to the University of Utah on April 30 to attend Nash’s graduation ceremony.

To register for the upcoming FAM JAM, visit: https://www.fam177a1.org/fam-jam-2026.