Help Roisin raise money

Roisin had genetic testing and we found out that she is missing part of chromosome 17 that encompasses the Neurofibromatosis Type 1 (NF1) gene.

NF1 is a genetic disorder that causes tumors to grow on the nervous system throughout the body. It is characterized by café au lait spots, neurofibromas (small growths) on/under the skin, and freckling in the armpits/groin. Optic pathway gliomas, scoliosis, tumors in the brain and spine, and learning difficulties are also associated with NF1. Most tumors are benign, but there is a small chance of malignancy. NF1 presents differently patient to patient with a range of symptoms across the board. Currently, there are only 2 FDA-approved drugs on the market for NF1.

Roisin has NF1 Microdeletion Syndrome, which is a severe form of NF1. Characteristics of this are: developmental delays, facial dysmorphism, an increased risk of tumors (benign and malignant), along with the typical NF1 characteristics. Roisin is currently in OT/PT/SLT and is under NF1 pediatric care at WashU/Children's NF Center.

The Neurofibromatosis Network, along with the Children's Tumor Foundation, work tirelessly raising funds for NF research, clinical trials, and patient/family education.