To understand our mission, it's important to start with a definition of Neurofibromatosis (NF). Although not well known, NF results in one out of 3,000 births. NF causes uncontrolled growth of tumors along the nerves and can lead to blindness, deafness, severe disfigurement, brain tumors, cancer and death. Our mission is to meet the needs of people impacted by NF by providing comfort, support, education, advocacy and funding of research for a treatment, prevention or cure.
We also collaborate with each of the hospitals and provide quarterly support group meetings for patients. Patients develop supportive relationships, discuss relevant issues and build self-confidence.
The annual Family camp provides a safe haven for those living with NF where their disfigurement or physical challenges are understood and accepted. It provides an opportunity to build self-esteem and establish social connections. The ultimate goal is to provide a retreat from the daily challenges and restrictions of NF and to strengthen self-confidence and build independence.
Parent of NF Patient
"I have been to this camp at least 7-8 times. There is so much fun to have but most of all it has been such a great support system for those of us who have Neurofibromatosis and for family and friends too. It gives us the opportunity to be in a group of people who understand one another. A time to have fun and be who we are without judgment and funny looks! A time to feel loved and accepted. A time to be a community who are real and not fake. A time to come together and cry and laugh. I can't wait to see my 'old' friends and meet new ones!"
Adult NF Patient