The Food and Drug Administration (FDA) approved the use of selumetinib to treat children and young adults with inoperable plexiform neurofibromas – a type of nerve sheath tumor associated with Neurofibromatosis Type 1. The approval was based on data collected from a clinical trial run by Dr. Brigitte Widemann, Chief of the NCI Pediatric Oncology Branch and co-leader of MyPART, which showed selumetinib reduced the size of these tumors in about 70% of patients and improved patients’ quality of life. Read more on the NCI blog here.

Dr. Lori Wiener, head of the Pediatric Oncology Branch Psychosocial Support and Research Program, led a Facebook Live chat on Thursday April 23^rd to discuss how parents of children and young adults with cancer and other serious illness can navigate the additional stress of the COVID-19 pandemic. She was joined by her colleagues Drs. Andrea Thurm and Krystal Lewis, clinical psychologists from the National Institute of Mental Health. To start the conversation, Dr. Wiener highlighted coping tips that all began with the letter “C”:

• Calm – prioritize self-care to manage your anxiety
• Continuity – maintain consistency and structure in your routine to help keep order in times of uncertainty
• Control – provide choices whenever possible to help feel some control in the current situation
• Connection – make time to connect with friends and family while still practicing social distancing
• Creativity – think about expressive outlets you can do at home, like making art, gardening, or playing music
• Compassion – be kind to yourself during these uncertain times

Watch the full video here.

Several resources for coping with the additional stress of COVID-19 were referenced throughout the chat and are listed below.

• CDC.gov – stress and coping resources from the Center for Disease Control and Prevention (CDC)
• COVID-19 and Childhood Cancer Resource Library from St. Jude
• First Aid for Feelings – a workbook for children on coping with COVID-19
• Something Strange Happened to my City – a children’s story about social distancing and the pandemic
• Supersibs.org – a resource for siblings of children and young adults with cancer
• Good-Grief.org – resources for coping and grieving during COVID-19

BJ Thomas is the lead research nurse for MyPART and a critical member of the MyPART team. She began working in the NCI Division of Cancer Epidemiology and Genetics (DCEG) on large family-based studies for chronic lymphocytic leukemia, inherited bone marrow failure syndromes, and Hodgkin and non-Hodgkin lymphomas. When the Pediatric Oncology Branch started MyPART and the Natural History Study of Rare Solid Tumors in collaboration with DCEG, BJ thought her background would be a perfect fit for MyPART.

Reflecting on being a part of the MyPART team from the start of the initiative, BJ says, “I have been [here] almost since the beginning.  I have seen it grow and evolve over the past two years and I like to think that I have my finger on the pulse of most aspects of the [natural history] study.” As the lead research nurse of MyPART, BJ enrolls patients on the Natural History Study of Rare Solid Tumors, speaking to each participant and their family to answer all of their questions. She also coordinates their visits to the NIH Clinical Center. For those who participate in the study from home, BJ sends paperwork and sample collection kits and makes sure each participant provides the necessary information for the study. 

Outside of MyPART, BJ loves to travel. Although she’s never lived outside of Maryland, she’s traveled to every continent except Antarctica and Australia. Along the way, she collects international Christmas ornaments. In addition to international travel, BJ loves working at the NIH. She describes her co-workers as dedicated, hard-working, and passionate about patient care. BJ explains, “the atmosphere at NIH is one of collaboration and cooperation with a desire to learn and teach, and each person brings a unique skill-set to the team.”

When asked what she enjoys most about being a part of MyPART, BJ answers:

“I love making a difference in the lives of our patients.  No request is too small.  No interaction is insignificant.  Living with the treatment and management of cancer can be an overwhelming activity for patients, caregivers, and family members.  If I can help lighten their burden in some small way, help them accomplish one goal, give them a bit of information to help decision making, facilitate getting something done that they need, then my day is well spent.”

Sara’s Cure is a non-profit organization that advocates for research and awareness of clear cell sarcoma, a very rare form of sarcoma. Sara’s Cure began in 2016, when a 17-year-old named Sara was diagnosed with clear cell sarcoma and her family learned about the limited research and focus on clear cell sarcoma. The organization, officially founded in 2018, is a “grassroots, race-against time campaign” to increase and accelerate clear cell sarcoma research efforts to find a cure. Sara’s Cure advocates have spread awareness through participation in magazine features, childhood cancer podcasts, and local news broadcasts. Sara’s Cure also hosts their own events to raise awareness and give young adults with clear cell sarcoma a voice. They are also active on social media – follow them on Twitter (@cure_sara), Instagram (@sarascure), and Facebook. Learn more about Sara’s Cure here.

Next Advocacy Spotlight: Appendix Cancer/Pseudomyxoma Peritonei Research Foundation (ACPMP)