by Trishia Shelly-Stephens, photos by Inge Vandormael & Andi Last — What do you get when you put 44 LFS patients and 44 family members, including a Pulitzer Prize winning author and 10 medical and mental health professionals, together in Ohio? The 2024 Living LFS Jennifer Mallory Family Camp, of course!
This year’s camp took place August 23-26, 2024 at Flying Horse Farms in Mt. Gilead, Ohio. People traveled from all over the US and even from as far as the UK to attend our third camp. Families that met at the first family camp in Montana in 2019 or our second family camp in Colorado in 2022 reunited, and new families finally got to meet others who are living with Li-Fraumeni syndrome.
This year’s camp provided several breakout sessions, including Mindful Self-Compassion Training for LFS patients and caregivers. Other sessions included Grief and Bereavement, Genetics 101, Balancing Food, Body and Movement, Coping With Mental Health, and Nutrition Guidelines for Cancer. Each family was provided a copy of Lawrence Ingrassia’s book, A Fatal Inheritance: How a Family Misfortune Revealed a Deadly Medical Mystery, about his family’s experiences with Li-Fraumeni syndrome. Mr. Ingrassia also participated in a very informative Q&A session and graciously signed books for attendees.
Dr. Payal Kincha and her team were on hand to help 33 LFS patients donate blood for the EDISYN floating tumor DNA liquid biopsy study. A huge thank you to Julie Troiano, a registered nurse and LFS patient, for coordinating local nurses to volunteer to draw blood.
The weather was outstanding, and many campers enjoyed outdoor activities like zip lining, a ropes course, archery, and swimming and chalk art at the pool, while those wanting to stay cool spent time in the arts and crafts room and activity center.
We also had several LFS patients and caregivers volunteer to share their talents at camp! Coach Mark Lehman hosted a soccer skills session. Nancy Alvarez taught us how to line dance. Artist and Living LFS secretary Inge Vandormael once again brought out our artistic side, designing and painting our family camp handprint sheet for campers to leave their mark, and creating elephant canvases for Wine and Paint Evening. NYC K-9 police officer Paul Urquiaga once again arranged for Emergency Service Vehicles to be on hand for the kids to oooh and ahhh over. Paul also arranged the first meeting of the League of Extraordinary Gentlemen (aka Guy Talk), appropriately held in the woodshop.
Family Camp ended with our famous talent show: Sonny & Cher (Kathy and Jamie Higgins) stole the show, and rising star Kate Peytavin and friends showed us how to Shine Bright like a Mutant. Following the talent show, everyone walked the memorial path, lined with luminaries decorated with the names of those loved ones lost to LFS. We walked the path to the lake, taking time to honor and remember those who are gone but are always in our hearts.
Camp is such a life changing experience. Living LFS is so happy to be able to bring families together to share stories, find connections and make lifetime friendships. Having others who understand what it means to live with Li-Fraumeni syndrome is priceless.
To all of the clinicians who graciously volunteered their time and expertise to present at camp: Jaclyn Schienda, Dr. Colleen Spees, Carly Grant, Catherine Wilsnack, Dr. Payal Khincha, Dr. Camella Rising, Dr. Rowan Forbes Shepherd, Ameila Coffaro, and Addie Fishstein, THANK YOU. It’s professionals like you who make such a difference to those of us living with LFS.
We cannot give thanks enough to those who have generously donated to Living LFS. Special thanks to these donors for the sponsorship of the 2024 family camp: Jean and Dave Yost, Ed Hatcher and Angie Cannon, Barb and Craig Kirkpatrick, and our generous anonymous donors.
Thanks also to everyone who hosted a Facebook fundraiser for us, and everyone who gave anything from $5.30 to $5300. As an all volunteer organization, every dollar goes to making living with LFS a little bit easier for community members.
Stay tuned for information on our next Jennifer Mallory Family Camp in 2026!
