Children's Tumor Foundation
The disorder affects 1 in every 2,000 births.
May is Neurofibromatosis (NF) Awareness Month, and one local family wants to bring attention to, and raise awareness of, the rare genetic disorder that causes tumors on nerve tissues throughout the body and affects one in every 2,000 births.
World Neurofibromatosis Awareness Day is Friday, but NF affects the Roma family of Hatfield Township every day.
In 2019, Jeremy and Pamela Roma’s daughter was diagnosed with NF1; it was then through genetic testing, Jeremy said, that they discovered Pamela has the disorder as well.
“Despite it being more common than Cystic Fibrosis,” Jeremy said, “there is little public awareness surrounding NF. There’s currently no cure and, in my opinion as a father, not enough available treatments.”
NF, after attacking nerve tissue, can lead to blindness, bone abnormalities, disfigurement, learning disabilities, disabling pain, and cancer, according to the Children’s Tumor Foundation.
After receiving some “scary” bloodwork results from the Children’s Hospital of Philadelphia in February, Jeremy said he could no longer sit still and not try to affect change.
He said all the other conditions their nine-year-old battles – ASD, ADHD and hormone growth deficiency – can all be traced back to NF.
Thus, he is taking part in a 50 Miles for Children's Tumor Foundation charity run on Facebook and the Romas have partnered with Be Still Nutrition on S Main Street in Hatfield Borough for a second charity event from 9 a.m. to 2 p.m. May 25.
Roma said a portion of the proceeds from the charity event will go to his charity run, which is directly linked to CTF. He said he is running for his wife and daughter. Thus far, the Romas have raised $1,231 toward their $3,000 goal.
“My motivation is to spread awareness, raise donations, and, ultimately, have a better quality of life for my family, and the millions of people living with NF today,” Roma said. “I won’t stop until I find a cure.”
