“We call ourselves mutants,” said Tom Connolly, whose family is one of an estimated 500 living in the U.S. diagnosed with Li-Fraumeni syndrome (LFS).

On Aug. 24, Flying Horse Farms in Mount Gilead will be hosting a different kind of summer camp, one that carries on the legacy of an Ohio woman who dedicated her life to supporting families affected by LFS.

First recognized in 1969 by doctors Frederick Pei Li and Joseph Fraumeni Jr., LFS is a rare hereditary disorder that significantly increases an individual’s lifetime risk of developing cancer. It is caused by a mutation in the TP53 gene – one of the body’s primary defenses against cancer.

This week, around 120 individuals will travel from across the country to Flying Horse Farms for the third annual Jennifer Mallory Family Camp. Thanks to generous donations to Living LFS, the nonprofit sponsoring the camp, attendance is free for LFS families.

Connolly’s niece Jennifer Mallory, who passed away from metastatic breast cancer in 2020, was a founding member of Living LFS and creator of this camp, which now carries on her memory.

Younger attendees can look forward to games, crafts, canoeing, archery, and the much-anticipated talent show. Adult campers will also have the option to attend fun activities, but can also choose from a variety of lectures and talks related to LFS research and mental and physical health.

An especially exciting addition this year will be keynote speaker and award-winning writer Lawrence Ingrassia, author of “A Fatal Inheritance: How a Family Misfortune Revealed a Deadly Medical Mystery.” His book shares the history of LFS research, and how his own family came to discover that they have LFS. Ingrassia will participate in a question and answer time and will be available for a book signing.

Though LFS has affected Connolly’s family for generations, it was not until around 2000, while reading the Wall Street Journal, that Connolly even heard of LFS. Connolly’s father had passed from cancer when Connolly was entering first grade. From around 1988 to 1996, three of Connolly’s siblings and two of his nephews were diagnosed with and eventually died from various types of cancers.

Connolly’s great-niece and Mallory’s oldest daughter, Kiera Mallory, barely remembers the official diagnosis herself.

“I remember me and my siblings went to St. Jude’s hospital in Boston to participate in a study,” she said. “I think that’s where we got tested and came back positive for LFS. I want to say I was between the ages of 10 and 12.” Kiera Mallory, her three siblings, and their mother underwent testing to confirm an official LFS diagnosis. For Mallory and her family, this meant an entire lifestyle change.

While low doses of radioactivity, like those emitted by using the microwave or keeping a cell phone in your pocket, pose little risk to the average person, Mallory said these things pose a higher risk to those with LFS.

“When you have LFS you have to be really conscious of different things like going through those scanners that they use at the airport,” Mallory said. “Those use radiation which is bad for people that have that gene mutation. I know that my mom always told me to be super careful about where you keep your phone.”

After receiving an LFS diagnosis, patients must be closely monitored with frequent doctor visits and MRI scans to catch any cancer development early. This means significant medical costs for patients.

While the family’s diagnosis did mean changes for each of them, Jennifer Mallory immediately set out to help. She was a founding member of Living LFS, but she wanted to do more. She came up with the idea to start a family camp.

Her youngest daughter Lily Mallory said the camp’s purpose was “to bring people together and cultivate this environment of education and love and make sure that everyone knows that they’re not alone.”

When the Mallorys received their diagnoses, they all had one another for support. “I feel like it kind of helped that none of us were alone,” Kiera Mallory said. But there are those with LFS who have no familial support. Jennifer Mallory wanted to change that.

“My mom was super creative and would go to all ends just to help people, and I think that was just one of her ideas to bring people together and help give back,” Kiera Mallory said.

Both girls emphasized the importance of having a place where they could connect with others facing the same struggles.

“Having one thing in common can bring so many people together,” Kiera Mallory said. “It kind of feels like you’re coming home when you get to see everyone.”

“LFS family camp – It comes pretty close to Disney,” Lily Mallory said.

Jennifer Mallory’s legacy continues to inspire and support LFS families. Those who wish to help can contribute to ensuring that her vision of a nurturing community remains a reality. To contribute, visit https://livinglfs.org/donate. Donations will help support the organization’s annual Hardship Grant Program, which offsets medical expenses for LFS families.

Hannah Bryan is a correspondent for AIM Media Midwest. She can be reached at [email protected].