The Chris “CJ” Johnson Foundation is a non-profit organization established in 2012 by Ritchie Johnson in memory of her son Chris, who passed away that same year from renal medullary carcinoma (RMC), a rare and aggressive from of kidney cancer. In April 2013, the foundation was granted its 501(c)3 status.  Before Chris passed away, he shared his desire to create a foundation to help individuals diagnosed with RMC, and today that vision has become a reality. The primary goal of the foundation is to educate and raise awareness about RMC, while working towards the ultimate goal of discovering a cure. The foundation is headquartered in Sugar Land, Texas and has a close working relationship with the physicians and staff at the University of Texas MD Anderson Cancer Center.

RMC is most commonly diagnosed in young males and African American individuals who have sickle cell trait, an inherited version of a gene that causes red blood cells to form an abnormal sickle shape. Although individuals with sickle cell trait do not develop sickle cell disease, they are at an increased risk for developing RMC. Given RMC’s prevalence in the African American community, the Chris “CJ” Johnson Foundation aims to eliminate health disparities across the RMC community while advocating for cutting-edge treatment for all individuals diagnosed with RMC.

The foundation is dedicated to providing information and resources for the RMC community and facilitating access to organizations who offer travel and lodging assistance for MD Anderson Cancer Center patients. Additionally, it organizes virtual peer support groups and events to raise awareness and support RMC research.

MyPART welcomes the Chris “CJ” Johnson Foundation to the MyPART Network and shares their passion for improving the lives of those living with rare cancers and their families.

MyPART Executive Director, Dr. Abby Sandler, participated in two virtual panel discussions and shared updates from the MyPART program. On January 17^th, Dr. Sandler was a speaker at the monthly Trans-NCI Extramural Awareness Group (TEAG) Forum. This internal NCI forum series invites program managers, researchers, and leaders from across NCI to discuss their research programs in an effort to improve awareness of NCI programs across the institution. The January forum was entitled “Rare Cancers—Updates on the NCI My Pediatric and Adult Rare Tumor (MyPART) Network and the Rare Disease Clinical Research Network (RDCRN).” Dr. Sandler presented an overview of the MyPART program and answered audience questions along with co-speaker Dr. Tiina Urv, Program Director of the Rare Disease Clinical Research Rare Disease Clinical Research Network (RDCRN). The panel provided an opportunity to educate NCI colleagues across NCI on rare cancer and rare disease research.  

Dr. Sandler also participated in TargetCancer Foundation’s webinar, “Patients as Partners in Rare Cancer Research,” on January 25^th, along with Dr. Diane Diehl, Director of Scientific Operations for Count Me In, and Barbara Van Hare, President of Pattern.org, a program through the Rare Cancer Research Foundation. Each panelist provided an overview of their patient-driven rare cancer research programs, highlighting that progress in rare cancer research cannot be made without the participation from patients and families experiencing rare cancers. Jim Palma, host of the webinar and Chief Executive Officer of TargetCancer Foundation, a MyPART advocacy partner, also reviewed the foundation’s TRACK-100 study, a study seeking to learn about the genomic landscape of rare cancers. While each panelist described studies that differed slightly in focus, all programs aim to advance rare cancer research through a non-interventional study that engages directly with patients. Watch a recording of the webinar here.

The NCI CCR Pediatric Oncology Branch (POB) website now hosts an updated section on the POB Neurofibromatosis (NF) Program. Led by POB Chief and MyPART co-leader Dr. Brigitte Widemann, POB’s NF team has had a long history of studying this group of genetic cancer predisposition syndromes, which includes NF1, NF2, and schwannomatosis. These genetic conditions can lead to the growth of nerve tumors throughout the body, as well as a host of other physiological and cognitive effects. The new POB NF Program website hosts information on NF and an overview of the research conducted by the POB NF Team. Visitors can also browse patient stories, review current clinical trials, and access patient resources specific to the NF community. Visit the new NF Program website here. 

Tune in on Monday, February 26^th from 2 to 3 p.m. ET for an informational webinar as members from Data for the Common Good (D4CG) present pediatric cancer data standards and their contribution to the upcoming Childhood Cancer Clinical Data Commons. Data standardization and harmonization are important considerations for facilitating collaboration across cancer research efforts. The D4CG is a research effort supported by the NCI Childhood Cancer Data Initiative (CCDI) and will allow researchers to access harmonized and standardized participant-level demographics and clinical data collected from multiple studies. Attendees will also have the opportunity to ask questions during the Q&A session. Register for this virtual event here.

For more information on CCDI events, including past event recordings, please visit the CCDI Events and Webinars webpage.