Odessa Black

Odessa was diagnosed with NF1 in 1995 at age 6. When she was about 14, she started having surgeries to remove tumors on her spine. She currently has 2 tumors in her neck that are pinching her spinal cord that are no longer able to be removed and continue to grow. She has had multiple surgeries since then. In 2008, Odessa had a high grade MPNST malignant peripheral nerve sheath tumor removed from her sciatic nerve in her left leg. She is a survivor! Odessa has endured 25 surgeries and more than 84 MRIs in her lifetime so far. Over time NF has taken away her ability to walk and also the use of her arms and hands. She is now quadriplegic. Odessa has been on many drug trials over the years and more recently 2 MEK Inhibitors trials with some success. Odessa lives at home with her family and her dog. She loves butterflies, animals and playing games on her iPad. Odessa continues to be optimistic and hopeful that one day there will be a drug that will help her. That is why we tell people about NF to raise awareness and raise funds through events like Cupids to support NF research to find a treatment and a cure for NF. We are forever hopeful that one day we will #EndNF!