Events

Living LFS Jennifer Mallory Family Camp 2022

Living LFS proudly presented the second Jennifer Mallory Family Camp, this year at Rocky Mountain Village Easterseals Camp in Empire, Colorado, August 11-14, 2022.

After a long 3 year hiatus due to COVID-19, Family Camp in 2022 was once again a resounding success. 109 attendees included 53 people of all ages with Li-Fraumeni syndrome, their family members, caregivers, and 6 clinician presenters.

Help us make the NEXT Living LFS Family Camp a reality!

PRESENTERS

We want to express our deep gratitude to all the clinicians who donated their time, knowledge, and expertise to be with the LFS community at Family Camp this year:

Living LFS Board Member Catherine Wilsnack, MSW, LMSW, a doctoral student at the University of Texas at Austin Steve Hicks School of Social Work who works alongside the NCI’s LFS research team, Addie Fishstein, MSW from Children’s Hospital of Philadelphia, and Dr. Camella Rising, registered Dietician Nutritionist at the National Institutes of Health (NIH) presented breakout sessions that resonated deeply with Family Camp attendees. Topics included Caring for Your Mental Health and Well-being, Coping With Grief and Bereavement, Let’s Talk Adolescents and Young Adults (AYAs), Caregivers, and Supporting a Balanced Relationship with Food, Movement and Body Image.
Genetic counselor and Living LFS Medical Advisory Board Chair Jaclyn Schienda, SCM, CGC from Dana Farber Cancer Institute, genetic counselor Carly Grant, MS, CGC from Massachusetts General Hospital Center for Cancer Risk Assessment, and genetic counselor Jennie Vagher, CGC from Huntsman Cancer Institute at the University of Utah offered breakout sessions that included the popular hands-on Genetics 101 (with click-together DNA strands!), Talking to Your Kids About LFS, Navigating Your Medical Care, and Ask a Genetic Counselor.
Dr. Luke Maese, D.O. from Huntsman Cancer Institute and Dr. Brian Crompton, M.D. from Dana-Farber Cancer Institute, both members of the EDISYN Consortium, remotely presented their work on detecting cancer sooner in the LFS community using liquid biopsies and circulating tumor DNA (ctDNA). Watch the presentation. As at our 2019 Family Camp, where EDISYN’s work officially got underway with blood donated by the Living LFS community, campers were once again invited to donate blood to the EDISYN study through the NIH. 31 members of the Living LFS community who are positive for the TP53 gene mutation participated in 2022.

ACTIVITIES

Living LFS Board Members and community members ensured Family Camp offered something for everyone who participated, and we couldn’t be more thankful!

Living LFS community member Paul U. from the NYPD K9 Unit invited Deputy Chief Lorenz and Officer Gaskins from Empire, Colorado Police Department, and Special Operations Captain Don Koogle from the Clear Creek Fire Authority, to give campers an up close and personal look at the equipment and vehicles the first responders use to keep us all safe! The demonstrations were enjoyed by all. Paul also organized the “Melted Ice Breaker” activity to help campers and their families get to know one another better!
Living LFS Secretary and accomplished artist Inge Vandormael coordinated the Wine and Paint Evening at camp, preparing 20 canvases with a sunflower design for adults in the Living LFS community to paint, express their inner creativity, and share special bonding time. The highly popular evening drew many additional participants, including kids, all of whom freestyled their own paintings! Thank you Inge for the wonderful event!
Inge and fellow Living LFS Board Member Robyn Hamilton provided the Craft Corner, where kids (and unexpectedly, adults!) spent hours enjoying making dreamcatchers, paper elephants, bracelets, coloring pages, and more!
Robyn and Inge also organized and presented an evening of collaboration, balance, calming and grounding with essential oil lava rock bracelet making for those 15 and over.
TALENT SHOW! The off-the-charts talents of the Living LFS community was on display Saturday night at Family Camp: from a wonderful video presentation, to singers, dancers, guitarists, pianists, and even a comedian, campers laughed, cried, and watched in awe. All were entertained. Each contestant received a rare and unusual $2 bill for entering, and three groups of performers split the grand prize stack of $2 bills, generously donated by Living LFS community members Bill and Nancy Lehman. Thank you all!

IN MEMORY

We were heartbroken to learn of the unexpected passing of Mason Fisher, a member of the LFS community, the week prior to Family Camp. Mason was a student at Ohio State University, where he was studying medicine to help others with LFS. Mason passed while participating in a charity bicycle ride to raise money for cancer patients. He was just 2.9 miles from the finish line. Our hearts go out to Mason’s mother, Mary Beth Fisher, and Mason’s aunt, Colleen Spees, both of whom were planning to attend Family Camp this year. Colleen, a dietician, was to present the Nutrition and Physical Activity Guideline for Cancer Survivors in 2022 as she did at camp in 2019. Campers missed Colleen and Mary Beth’s presence, and on Saturday walked a 2.9 mile route on the beautiful RMV property in Mason’s honor. Thanks to Living LFS Founding Board Member Jennifer Mills for creating this walk. We are deeply honored that Mason’s family asked for donations to Living LFS in Mason’s name. Mason’s friends, family and colleagues have given generously to support the Living LFS community.

THE VENUE

We were so lucky to have Rocky Mountain Village Easterseals Camp in Empire, Colorado as our Family Camp location this year: stunning views, wonderful weather, excellent meals and accommodations, friendly staff, and so much to do! Campers took full advantage of the zipline, swimming pool, fishing pond, hiking trails and everything the 220 acre property has to offer.