*For those of you who do not know about this particular challenge of Glen’s, let me (try to) explain. Glen was diagnosed with Neurofibromatosis Type 1 (NF1) at 5 months of age. This genetic disorder impacts his body in many ways; most notably he is missing the tumor blocking agent in his body that the rest of us have. Besides his Rhabdo tumor that tried to take his life, he also has a tumor on his optic nerve, NF spots on his brain (supposedly nothing to worry about), some minor markings on his skin, and Pseudarthrosis of the Tibia. Prior to the break, his tibia was severely curved and had a significant amount of sclerosis (dead/dying bone), so he wore a protective brace 24/7 to try to keep it intact. One of the weird things this disorder does is not allow the bone to heal or repair like normal. Unfortunately, it is a very rare skeletal deformity and varies drastically in its presentation, so trials are a challenge to populate, therefor there are not a whole lot of treatment options. Fortunately for us Glen’s surgeon, Dr Jain (the protégé of the leading, now retired, surgeon for this disorder), is relatively close-by in Cincinnati and is part of a larger group of specialists that we see through their NF Clinic, so all specialists he sees are on the same page, and oftentimes in the same appointment. We are very confident that Glen is in the right hands with Dr Jain, and are hoping for a longer surgical respite this time around! 

  Eleanor Chen M.D., Ph.D.

Funded: 07-01-2019 through 06-30-2020
Funding Type: Research Grant
Institution Location: Seattle, WA
Institution: University of Washington affiliated with Fred Hutchinson Cancer Research Center, Seattle Children's Hospital

Rhabdomyosarcoma (RMS) is a rare and devastating cancer of childhood. Identifying and characterizing novel genes essential for RMS cancer growth can help improve our understanding of RMS disease process. Novel genes identified can also serve as potential therapeutic drug targets for treating RMS patients. BCOR is among the most frequently mutated genes in RMS. However, the role of BCOR in promoting cancer growth and disease progression remains unexplored. As the recipient of the Glen Parker Bayne Hero Fund St. Baldrick's Research Grant, Dr. Chen is working to characterize the biological function of BCOR in RMS. Completion of the study will not only provide new insights into the role of BCOR in the disease process of RMS, but also therapeutic rationale for targeting BCOR in improving survival outcomes of RMS patients. This grant is named for the Glen Parker Bayne Hero Fund which was established to honor this little boy's courageous battle with rhabdomyosarcoma and celebrate his survivorship. Glen was diagnosed when he was almost 2 and endured a year of intensive treatment. Today he has no evidence of disease and Glen's Army, a group of family and friends rally to raise funds and awareness for research to find cures.