The NCI Small Business Innovation Research (SBIR) Center awards grants for innovation and facilitates small business involvement in federally funded research. They have recently announced a new funding opportunity for early stage investigators: The Small Business Concept Award will fund early stage investigators for innovation to address pediatric and other rare cancers. SBIR aims to support early stage investigators in biotech entrepreneurship through this funding opportunity. Learn more here.   

Crystal Flowers, CRNP, is the nurse practitioner for MyPART. She started her career at the NCI years ago as a registered nurse while she was still pursuing her Master’s in Nursing. After becoming a nurse practitioner, she was looking for a position she felt was a good fit. When she heard of MyPART, she says, she “jumped at the opportunity, and [has] been fortunate to work with a team and community of amazingly intelligent people.”

Her roles within MyPART vary. In addition to serving as the nurse practitioner for MyPART, Crystal also works with the principal investigator of the Natural History Study of Rare Solid Tumors, as well as the MyPART geneticist and psychologists to collect different forms of patient data and understand the history of patients’ rare tumor conditions in an effort to offer treatment recommendations for patients. She also helps to coordinate patient visits to the NIH Clinical Center with the MyPART research nurses, patient care coordinators, and post-bacs. The role she enjoys most, she explains, is “being an advocate and simplifying the information patients receive during clinic visits. Those visits can be long, intense, and overwhelming, but seeing the relief expressed by a patient when they feel they have a grasp on what has occurred, is fulfilling.” Her favorite aspect of MyPART is that the project aims to gain information across a wide variety of rare tumors by collecting the most information possible. She explains further, “[MyPART] not only seeks to gain knowledge of the collective [of rare tumors], but also the individual, to assess the possibility of providing precisely directed healthcare [for each patient].”

Crystal grew up in the Midwest as the oldest of 3 children and enjoys spending time with friends and family, as well as traveling and exploring new cultures (except during the pandemic!). She has always had passion for health prevention and promotion, which she expressed throughout her career, first as a health educator, then as a registered nurse, and now as a nurse practitioner. She explains, “I have always seen my focus as helping patients [and] families think and connect holistically with their illness/disease and understand that progress towards management and/or [a] cure is a collective effort.”

Learn more about the MyPART team here.

On December 10^th, 2020, The Life Raft Group celebrated the work of women in the sarcoma field during their virtual Women in Sarcoma Gala. Sarcoma is a group of rare cancers that form in the bones, muscle, and connective tissue throughout the body. The gala honors women who have made a difference in sarcoma patients’ lives through clinical work, scientific research, and advocacy. Denise Reinke, MS, NP, MBA, former president and CEO of SARC, was recognized with the inaugural Women Paving the Path Forward Award. Denise began her work in the sarcoma field in 2002 at the University of Michigan. She was integral to the creation of SARC, a consortium of academic researchers, pharmaceutical companies, and biotech companies working together to find breakthrough treatments for sarcoma. She was recognized for her contributions to sarcoma research and the sarcoma patient community. We are delighted to have the opportunity to work with Denise, SARC, and The Life Raft Group through the MyPART Network. Learn more about Denise and her work here.

One year ago, MyPART team members joined with collaborators at the first annual MyPART Retreat. We set goals and priorities, listened to seminars, attended a poster session, and enjoyed team building activities together on the NIH campus in Bethesda. For the holidays, part of the MyPART team participated in a holiday door decorating contest and won first place! The design featured Zilly, an emotional support dog from The Children’s Inn who brings joy to pediatric patients and their families when they visit the NIH Clinical Center. We also participated in an ugly sweater contest along with staff from the NCI CCR Pediatric Oncology Branch!

Last January, we also celebrated the one-year anniversary of the opening of MyPART’s Natural History Study of Rare Solid Tumors! The study began enrollment in January 2019 and after one year, had enrolled over 100 patients across 10 different rare tumor types. Today, we’ve enrolled almost 250 patients across over 30 different rare tumor types.

This year, things are quite different, but our work to improve the lives of children and young adults with rare tumors pushes forward. We attend virtual meetings, which sometimes include appearances by our furry friends, and connect digitally. Many of us have been teleworking since March and have not been to our NIH offices in over 9 months. Others have been able to return to the lab and conduct experiments while socially distancing. We look forward to a time when we can gather in person together as a team, as well as attend conferences to meet with advocacy partners, collaborators, and others in the rare tumor research community. Until then, we continue to advance our mission to improve the lives of children, teens, and young adults with rare tumors.