Because federal funding for NF research has been canceled this year, CTF's research funding has become more important than ever. For the next six days, all donations will be matched to double each donor's impact.

go.ctf.org/donate

The Children's Tumor Foundation (CTF) created the NF awareness graphics that I've been sharing. CTF also raises money for research to find better treatments, and maybe someday a cure, for the NF disorders.

Once formally diagnosed with NF1, regular screenings for tumor growth and other symptoms can help to catch problems early and make interventions more effective.

#NFAwareness #EndNF 3/3

Called "Café-au-Lait" spots, or CALS, these are often the first symptom of the NF1 disorder.

If a child has six or more CALS the size of a quarter or larger, testing for the NF1 disorder is recommended. 2/3

Before we even began trying to conceive, I started taking pre-natal vitamins and avoiding foods, drinks, and chemicals that could harm a developing baby. My efforts likely helped prevent other problems, but NF1 was encoded in my son's DNA from the very beginning.

#NFawareness #EndNF

These new mutations arise at random in sperm, eggs, and embryos and are not caused by any choices that the parent made.

This was especially frustrating for me because I had been militant about doing everything in my power to have a healthy baby.

My son is the first in our family to have NF but, if he has children someday, each child would have an approximately 50% chance of inheriting the disorder.

A friend of ours passed away suddenly last year when an NF tumor in her chest created too much pressure on her heart. Other friends are losing their vision, hearing, and mobility due to NF tumors.

Federal funding for NF research has been eliminated for at least the next year.

#NFawareness #EndNF

My son's scariest tumor is on his brain stem. It could affect brain activities, disrupt the flow of cerebrospinal fluid, or damage his spinal cord. Risks include behavior changes, chronic pain, paralysis, or death. He needs frequent MRI scans. Eventually, he may need chemotherapy or a risky surgery.

Schwannomatosis is a term that describes the rarer varieties of NF which affect one in every 20,000 births. The name comes from "schwannoma" which is a certain type of nerve tumor.

NF Type 2 (NF2) is the most common of the Schwannomatosis disorders. One in every 25,000 babies is born with NF2.

NF Type 1 (NF1) is the most common variety of NF. Approximately one child out of every 2,500 born in every community around the world is born with the NF1 disorder, including one of my own children.

The study of NF1 from an anthropological perspective is a primary area of my professional research.