The Time is Now: Philip’s Story of NF and Selumetinib
A major turning point for NF research occurred in 2020, with the announcement of the FDA approval of selumetinib (Koselugo), the first approved drug for NF. At that time we shared a story you might remember: that of Philip Moss. At the tender age of 6, Philip’s neck began to swell, which set off alarms for his parents. Despite medical intervention, the swelling persisted, prompting surgery to investigate further. The revelation was life-altering: a plexiform tumor and a diagnosis of NF1. But Philip’s journey led him to a groundbreaking clinical trial for a new medicine – a MEK inhibitor called selumetinib.
Selumetinib reached FDA approval as a result of CTF-funded research, and would not have been possible without your support. But now is the time for more treatments, for all types of NF! Please continue and deepen your CTF support by donating now at ctf.org/timeisnow.
As told by Philip Moss in 2020, when he was 14 years old:
“In the Spring of 2011, when I was six years old, my parents noticed my neck was swollen. My pediatrician thought it might be a swollen lymph node, so I took antibiotics to see if it would improve. When it did not, I had a surgical biopsy, and the results came back as reactive lymph tissue. A few months later, the swollen area of my neck was even larger, and this time, it was recommended that the suspected lymph node be removed completely. This time, the results were not so benign. Instead of finding a lymph node, the pathology report showed it was a plexiform tumor. I went to see a geneticist and learned that I had NF1.”
“Early attempts to stop the tumor’s growth using oral chemotherapy did not work. At first, the growth seemed to slow down, but then it really started to grow again. At the age of 10, I enrolled in the (selumetinib) MEK trial through the National Institutes of Health (NIH). The first six months of treatment were hard as I dealt with many tough side effects. I also had to adjust my routine to comply with the requirements of taking the medication on an empty stomach and keeping doses 12 hours apart each day. After about six months, it became easier to cope, especially when the first MRI showed not only that my tumor had stopped growing, but it had shrunk. This drug has been the answer to many prayers. At the one-year mark since enrolling, my tumor was 36% smaller. At almost five years on treatment, it is now over 60% smaller.”
“People don’t ask me what is wrong with my neck anymore. The drug does make me fatigued which is tough since most kids my age are active in sports or physical activities that are challenging for me. But I’ve found activities I enjoy, and friends that enjoy being a part of my life. I enjoy reading, gaming, Boy Scouts, coding, and more. I’m getting ready to start high school, and I’m thankful for all the donors who funded the doctors and researchers who made selumetinib possible. Now that it is FDA-approved, I am thankful that others may experience what I have experienced.”
2023 update:
Philip continues to see a 60% shrinkage in the size of his tumor! In his senior year of high school, Philip just made Eagle Scout and is searching for colleges next year. Watch the video below to track Philip’s ten-year journey.
The Time is NOW for the Children’s Tumor Foundation to end NF. Please donate today at ctf.org/timeisnow to change the course of tomorrow, and bring hope to all living with NF.
