Year Founded
1978
EIN
13-2298956
Local Leader/Exec. Director
Lauren Johnston, Development Manager
Primary Contact Name
Maureen Hussey
Main Address
697 Third Avenue
Suite 418
New York, NY 10017
United States
What We Do
Neurofibromatosis (NF) is a group of genetic disorders that causes tumors to grow on nerves throughout the body. NF affects 1 in every 2,000 births or about 4 million people worldwide. Anyone can be born with it and it affects everyone differently. NF can lead to blindness, deafness, bone abnormalities, disfigurement, learning challenges, disabling pain, or cancer. There is no cure yet.
Each year we host a walk in the Charlotte area to bring awareness to NF. The 2025 date has not yet been set, but information can be found at www.shinealightwalk.org. We are always open to participants and volunteers to help us!
Interesting Info
- NF is present in 1 of 2,000 births
- The Shine a Light Walk in Charlotte is the number 1 walk in the country, raising over $180,000.
- Anyone can join the cause and walk with us in October by registering for free at www.shinealightwalk.org
Geographic Location