Dr. Victoria Forster, pediatric cancer researcher and freelance science writer, gave a virtual seminar entitled, “Patient involvement in research: How to effectively integrate patients, survivors, and caregivers into research teams,” to the Pediatric Oncology Branch (POB) on November 4^th, 2021. Dr. Forster is not only a pediatric cancer researcher, but a survivor of childhood cancer herself. She was diagnosed with acute lymphoblastic leukemia (ALL) at age 7 and endured chemotherapy treatment. During her talk, she spoke of receiving methotrexate, a fairly new drug at that time, and discussed the toxic side effects she experienced, including partial paralysis (which, thankfully, was temporary). Today, as a cancer researcher and survivor, she advocates for patient engagement in research and for finding better and less toxic childhood cancer treatments.

Dr. Forster grew up in Chelmsford, England and earned her PhD in the biomedical sciences from Newcastle University. Dr. Forster is currently a post-doctoral fellow at The Hospital for Sick Children in Toronto, Canada researching pediatric cancers and pediatric cancer predisposition syndromes. In addition to her bench research, Dr. Forster is a passionate science communicator and advocate for patient involvement in research. She has received several honors for her science communication and advocacy work, including being named in Forbes 30 under 30 Europe List in the Science and Healthcare category. She has also written for numerous media outlets, including The Times, The Guardian, The Conversation, and Forbes Health. In 2017, Dr. Forster was named a TED Global Fellow and gave her TED talk on cancer survivorship in Tanzania.

In addition to sharing her story as a childhood cancer survivor and discussing some of her research, Dr. Forster shared her approach to connecting with the cancer survivor community through social media. Dr. Forster co-founded the Twitter account, @CancerSurvSM (“Cancer Survivor Social Media”), which hosts Twitter chats (archived under #CSSMChat) to promote interaction among cancer survivors, caregivers, and researchers. The account also provides a platform for childhood cancer survivors to share their experiences and advocate for more patient-centered research.

Dr. Forster ended her talk to the POB with several key takeaway messages about childhood cancer research and survivorship: “No childhood cancer can be considered “cured” when the price of “cure” is so high; A plea to never settle and to always keep refining and innovating to find more effective and kinder treatments for children with cancer; All childhood cancer survivors carry a lifelong burden with them. We must work towards reducing that as much as possible.”

Learn more about Dr. Forster, her research, and her science communication and advocacy efforts here.

Oxana Kapustina is a clinical research associate for MyPART. She is responsible for organizing the biospecimens, pathology samples, clinical records, and imaging data for the Natural History Study of Rare Solid Tumors. She explains, “I make sure that all these clinical results and data are always available for the team of doctors and nurses so that they can offer the best treatment possible for each patient!”

She began working at the National Cancer Institute as a clinical data manger about 7 years ago and had the opportunity to work with the Pediatric Oncology Branch. She remembers, “I was extremely impressed with how passionate the whole team was about helping each patient in their struggle with disease, [so] I was very happy when POB invited me to join their team [as a] research associate as it gives me an opportunity to work with patients directly and be more involved at every step of clinical studies.”

She is grateful for the opportunity to work with the MyPART team, which includes doctors, nurses, researchers, and others, because she has the opportunity to learn from each of the different members of the team. When asked what her favorite part about MyPART is, she says, “I think that patients who volunteer for [the] MyPART [natural history] study are truly heroes. The time and effort they contribute now may help future generations to live without fears and sufferings of cancer. It is a great honor for me to assist [with the] MyPART study and support our patients.”

Learn more about the MyPART team here.

• US Department of Health and Human Services (HHS) Secretary Xavier Becerra and HHS Deputy Secretary Andrea Palm visited the Pediatric Oncology Branch on November 4^th, 2021. They spoke with POB Chief, Dr. Brigitte Widemann, and with POB Investigator Dr. Jack Shern and were joined by NCI Director, Dr. Ned Sharpless and NIH Director, Dr. Francis Collins.
• Staci Martin, psychologist and researcher for MyPART, is a guest editor for a special issue on neurofibromatosis in the journal Cancers.
• Lori Wiener, psychosocial researcher for MyPART, is a guest editor for a special issue on “Psychosocial Considerations for Children and Adolescents Living with Rare Diseases,” in the journal Cancers.