For some people, the month of May consists of finals and celebrating getting out for summer break, but it is so much more for my family.  May is NF Awareness Month. NF stands for neurofibromatosis, which refers to genetic conditions that cause tumors to grow on nerves throughout the body. The term “NF” includes neurofibromatosis type 1 (NF1) and all types of schwannomatosis (SWN), including NF2-related schwannomatosis (NF2), formerly called neurofibromatosis type 2. NF affects more people than Cystic Fibrosis, Tay Sachs, Huntington’s Disease, and Muscular Dystrophy combined. It affects one in every 3,000 people. 

Our community should help bring attention to this rare genetic disease because one of our own lives with it, and she is my hero. My twin sister, Rhyan Symonds, 27’, was diagnosed with NF when we were four years old. She has bravely faced eight brain surgeries and many other obstacles in her life. She carries on with a smile on her face and never complains. She is a true inspiration to the community of what being a fighter means. Many other people fight the same disease as Rhyan, but no one hears about it. When asking Rhyan about her experience with NF, she tells us, “I wish I could change the amount of awareness NF has because I think to get a cure, more people need to know about it.”

NF Awareness Month is a time for people to raise awareness, educate those around them, and raise money to support research that will lead to effective treatments. You can help by spreading NF awareness by using the hashtag #ConnectNF on social media, you can repost NF posts to get more people aware and hearing about it, and lastly, you can donate as they continue to provide essential programs and resources to the NF community, the NF Network needs your help more than ever. Your contribution can make a difference by providing crucial information to our NF community. If you want to donate to the NF society, click here.