St. Jude hosts family conference on Li-Fraumeni syndrome

Photography by Biomedical Communications, June 8, 2018

The St. Jude Cancer Predisposition Program hosted its inaugural family conference in June with a focus on Li-Fraumeni syndrome, a condition that makes a person more likely to develop one or more cancers in various parts of the body.

Li-Fraumeni syndrome is caused by changes in a gene known as TP53, which controls how cells grow and divide and prevents cancers from forming.

The conference was created to bring together families with hereditary predisposition to cancer for a weekend of education and relaxation. Families living with Li-Fraumeni syndrome attended the conference to learn about the latest scientific advances and other important topics such as cancer screening, coping and communication. Young adults learned how to navigate the medical system and take responsibility for their own health care.

Families attended a Memphis Redbirds baseball game Friday night before the conference began Saturday at St. Jude with speakers, interactive sessions and a panel discussion. The weekend event concluded Sunday morning with a group photo and an opportunity for attendees to share their thoughts and deepen their connections with each other.

“Every aspect of the weekend was wonderful. It was great to meet other families affected by LFS. Until this conference, we had never met anyone outside our family who was affected. We learned a lot about the latest research. It was amazing to meet and have access to the top people working on this genetic mutation. It was a positive and enjoyable experience. St. Jude is a very special place.”

— Family member in attendance

  • Attendees and organizers take a group photo in front of the Marlo Thomas conference center.

    Conference organizers, presenters and attendees gather for a group photo.
  • A family poses in front of the baseball field.

    The Warbritton family enjoys the baseball game.
  • Dr. Kim Nichols poses with two women in front of the baseball field.
  • A mother and son smile while watching the baseball game.

    Nathan and his mother, Heather, watch the game from the stands.
  • A child submits her saliva into a plastic cup for DNA analysis.

    Kaelyn participates in a sample collection for isolating her DNA.
  • A mom smiles with her young infant.

    Braxton and his mother, Nadine, at the conference.
  • A girl holds up her mask while another girl laughs.

    Children enjoy an arts-and-crafts activity.
  • Kids work on arts and crafts at a table.
  • Dr. Kim Nichols speaks at the podium in the auditorium.

    Kim Nichols, MD, Cancer Predisposition director, welcomes families.
  • Joshua Schiffman speaks into the microphone.

    Joshua Schiffman, MD, Huntsman Cancer Institute, University of Utah, presents “Elephants, LFS and You!”
  • Children play a game.
  • Christian Kratz gives a presentation that shows whole body MRIs.

    Christian Kratz, MD, Hanover Medical School, Germany, discusses “Li-Fraumeni syndrome—Taking Control Though a Healthy Lifestyle.”
  • A brother and sister run around in the conference center.

    Siblings Nikalis and India enjoy a moment of play.
  • Jamie Maciaszek talks to children.

    Jamie Maciaszek, PhD, Cancer Predisposition, shows children in attendance how to isolate their DNA.
  • Niki Jurbergs gives a presentation on stage.

    Niki Jurbergs, PhD, Psychology, discusses how to talk about Li-Fraumeni syndrome with children and other family members.
  • Jennifer Perry speaks at the podium.

    Jennifer Perry, co-founder and president of the Li-Fraumeni syndrome Association, presents “The Power of Us.”
  • Emilia Pinto speaks into a microphone.

    Emilia Pinto, PhD, participates in a panel discussion.
  • Children play video games.

    Fun activities included a video game trailer for the children in attendance.
  • Children play video games outside of a video game truck.

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