Cancer Predisposition Family Conference on Li-Fraumeni Syndrome

 

Cancer Predisposition Family Conference on Li-Fraumeni Syndrome
Friday, June 8, 2018 – Sunday, June 10, 2018
Marlo Thomas Center for Global Education and Collaboration
St. Jude Children’s Research Hospital
Driving Directions >

Overview

On behalf of the Cancer Predisposition Program at St. Jude Children’s Research Hospital, we invite you and your immediate family to our inaugural Cancer Predisposition Family Conference weekend, June 8-10, 2018. The Cancer Predisposition Family Conference was created to bring together families with hereditary predisposition to cancer for a weekend of education, relaxation and fun!

This year’s event will focus on Li-Fraumeni Syndrome (LFS) and allow families living with LFS to learn about the latest scientific advances as well as other important issues such as cancer screening, coping, communication and for the young adults — learning how to navigate the medical system and take responsibility for your health care as you march out on your own. Throughout the weekend, there will be ample opportunities to strengthen the connections you have within your own family and create new connections with other LFS families.

Speakers

Kim E. Nichols, MD

Kim E. Nichols, MD
Director, Cancer Predisposition Division
St. Jude Children's Research Hospital

 

Kim E. Nichols, MD
Conference Chair

Dr. Nichols is the Director of the Cancer Predisposition Division at St. Jude Children's Research Hospital. As a pediatric oncologist, her research interests are in the molecular mechanisms that provide protection against viral infections and cancer. Her overarching goals are to understand how defects in these mechanisms contribute to disease and use this information to develop more effective treatments for children with increased genetic risk for infection and/or malignancy.

Towards this end, Dr. Nichols' research focuses on identifying novel genetic causes of childhood cancer, optimizing methods of tumor surveillance for children with increased cancer risk, evaluating the factors that influence parent and adolescent decision making and communication around genetic testing for heritable cancer risk, understanding the behavioral and psychological impacts of cancer genetic testing on children and their families, and increasing understanding and developing new therapies for malignant and non-malignant hematologic disorders, including B-cell leukemias and lymphomas, hemophagocytic lymphohistiocytosis and Epstein-Barr virus-associated lymphoproliferations.

Christian Kratz, MD

Christian Kratz, MD
Director of the Department of Pediatric Hematology and Oncology
Hannover Medical School

Christian Kratz, MD

Dr. Kratz is full professor in Pediatrics and Director of the Department of Pediatric Hematology and Oncology, Hannover Medical School. After obtaining his medical degree in 1996 from the University of Düsseldorf, Germany, he completed his training to become a pediatrician and pediatric hematologist/oncologist in Düsseldorf, San Francisco, and Freiburg. From 2009-2012, he worked as an investigator in the Division of Cancer Epidemiology and Genetics at the National Cancer Institute (Director: J. Fraumeni).

Dr. Kratz's research focuses on the genetic causes of childhood cancer. He chairs the German Fanconi Registry, the Genetic Cancer Predisposition Working Group of the German Society of Pediatric Hematology and Oncology and an International Genetic Variation Task Force. Together with Stefan Pfister, he has launched a Registry for patients with LFS and other cancer predisposition syndromes. One of his most important discoveries was the identification of KRAS germline mutations in patients with Noonan syndrome. Dr. Kratz chairs the German branch of the Li Fraumeni Syndrome Association (LFSA).

Joshua Schiffman, MD

Joshua Schiffman, MD
Professor of Pediatrics
University of Utah
Medical Director of the High Risk Pediatric Cancer Clinic
Huntsman Cancer Institute

Joshua Schiffman, MD

Dr. Schiffman is Professor of Pediatrics at the University of Utah and serves as the Medical Director of the Family Cancer Assessment Clinic (FCAC) at Huntsman Cancer Institute. His specific clinical interests are cancer susceptibility in families, with a focus on the genomic changes necessary for cancer development.

Dr. Schiffman contributed to a landmark study in the field of cancer genetics demonstrating that early cancer surveillance in families with LFS significantly improves overall survival. He continues to work with children and families at high risk for cancer development to discover genes that may be targeted for both prevention and treatment of childhood cancer. Dr. Schiffman recently has teamed up with collaborators from around the world to compare the genomics of cancer resistance throughout the animal kingdom – like in elephants – and use this information to guide experimental design in cancer research. 

Niki Jurbergs, PhD

Niki Jurbergs, PhD
Assistant Director of the Psychology Clinic
St. Jude Children's Research Hospital

Niki Jurbergs, PhD

Dr. Jurbergs is a pediatric psychologist who serves as Assistant Director of the Psychology Clinic at St. Jude, where she works to improve clinical practice and processes to allow for the most efficient and effective delivery of psychological services possible. Dr. Jurbergs knows that good mental health promotes positive medical outcomes and quality of life in pediatric patients with chronic illnesses and conditions. In addition to providing assessment, consultation, intervention, and psychotherapy services for St. Jude patients in the Psychology Clinic, she actively supports Departmental and Institutional training and research programs.

Dr. Jurbergs holds a BA in Psychology from the University of Tennessee at Knoxville and MA and PhD in Clinical Psychology from Louisiana State University. She completed her predoctoral internship at the University of Miami’s Leonard Miller School of Medicine and completed her postdoctoral fellowship at St. Jude Children’s Research Hospital. She has been licensed as a Psychologist for 11 years.

Jennifer Perry

Jennifer Perry
Co-founder and President
Li-Fraumeni Syndrome Association

Jennifer Perry

Perry is a Co-founder and President of the Li-Fraumeni Syndrome Association (LFSA), an organization dedicated to improving the lives of families with LFS by providing information, advocacy and support services. Through these approaches, the LFSA aims to educate, raise awareness and find better screening programs and treatments for individuals and families with LFS. By forming relationships with and supporting the variety of researchers and medical staff who can help achieve this, the LFSA wishes to help provide a better understanding of a complex syndrome to those who need it.

Special Guests

Holly Fraumeni

Holly Fraumeni, MSW
Vice President
Li-Fraumeni Syndrome Association

Holly Fraumeni, MSW

Fraumeni currently serves as the LFS Association’s Vice President and the Chief Executive Assistant to the President.  Holly is a retired supervisory special agent with the US Secret Service who feels very fortunate to come full circle and be able return to her interest in cancer epidemiology and prevention, access to health care, multidisciplinary support systems, and health education through volunteering with the LFS Association

Emilia Modolo Pinto

Emilia Modolo Pinto, PhD
Associate Scientist, Pathology
St. Jude Children's Research Hospital

Emilia Modolo Pinto, PhD

Dr. Pinto is a biologist acting as an Associate Scientist for the Pathology Department at St. Jude. She obtained a PhD in Physiopathology from the University of Sao Paulo, Brazil. Her current laboratory efforts include genomic and molecular analysis of adrenocortical tumors and other pediatric tumors associated with TP53 mutations and studies of phenotype/genotype correlation in the p53 pathway. One of her most important findings was the identification of the TP53-R337H mutation as a founder mutation in Brazilian population.

Dr. Pinto will serve as a member of the interactive panel discussion.

Other Conference Participants

Kayla Hamilton, MS, CGC

Kayla Hamilton, MS, CGC
Certified Genetic Counselor

Kayla will serve as a member of the interactive panel discussion.

Emily Quinn, MS, CGC

Emily Quinn, MS, CGC
Certified Genetic Counselor

Emily will serve as a member of the interactive panel discussion.

Jamie Maciaszek, PhD

Jamie Maciaszek, PhD
Clinical Research Associate II

Jamie will assist the teens in extracting and isolating their DNA.

Anastasia Ouma, RN, MSN, CNL

Anastasia Ouma, RN, MSN, CNL
Clinical Nurse Leader

Anastasia will assist the teens in extracting and isolating their DNA.

Preliminary Agenda

Friday, June 8

Time Event
Various times Arrive at Memphis Airport; make way to hotel; sign in for conference
6:00 pm Shuttle to the Redbirds game
7:00 pm Memphis Redbirds vs. Reno Diamondbacks – Go Redbirds!
9:00 pm Shuttle back to hotel

Saturday, June 9

Time
Event
8:00 am Shuttle from hotel to St. Jude Children's Research Hospital for conference
8:30 am Continental breakfast
Collect sample for those teens interested in isolating their DNA (Do this before eating breakfast!)
9:30 am Welcome and introductions
10:00 am Elephants, LFS, and YOU! – Dr. Joshua Schiffman
11:00 am Li-Fraumeni Syndrome – taking control through a healthy lifestyle – Dr. Christian Kratz
12:00 pm BBQ Lunch
1:00 pm For the parents: Breaking the Ice: Talking about LFS with Your Children and Other Family Members – Dr. Niki Jurbergs
For the teens: Isolate your own DNA – this will be fun! – Dr. Jamie Maciaszek and Anastasia Ouma, RN
2:00 pm The Power of Us – Jennifer Perry
3:00 pm Coffee and snacks
3:30 pm Interactive panel discussion:
Kim Nichols, MD – St. Jude Children's Research Hospital
Joshua Schiffman, MD – Huntsman Cancer Institute
Christian Kratz, MD – Hannover Hospital
Niki Jurbergs, PhD – St. Jude Children's Research Hospital
Emilia Modolo Pinto, PhD – St. Jude Children's Research Hospital
Emily Quinn, MS, CGC – St. Jude Children's Research Hospital
Kayla Hamilton, MS, CGC – St. Jude Children's Research Hospital
Jenn Perry – President, Li-Fraumeni Syndrome Association
4:30 pm Wrap up
5:00 pm Make way to the Danny Thomas Pavilion for dinner
7:00 pm Shuttle from St. Jude back to hotel

Sunday, June 10

Time
Event
8:30 am Arrival to St. Jude and continental breakfast
9:30 am Conference wrap-up – Dr. Kim Nichols
10:00 am Group photo
10:15 am Sharing thoughts, making memories and connections
12:00 pm Lunch
1:00 pm Shuttle to Memphis Airport