My name is Johanna and my daughter was diagnosed with NF2 in 2019 when she was 3 years old. She is the first in our family to have NF2 and since her diagnosis we have been trying to learn as much as possible about the disease and treatment options. When my husband and I discovered NF2 Biosolutions we immediately knew that we wanted to get involved in order to support others affected by NF2 and assist in any way we can to find a cure. We are very hopeful that gene replacement therapy will be the answer to NF2 soon! I live in Philadelphia and would be happy to connect with other individuals and families. There is great comfort in knowing that one is not alone in this NF2 fight. Please send me an email: Johanna@nf2biosolutions.org
Jesse Hunsberger tel:(484)223-8730
I am from New Tripoli PA., My son Jesse was diagnosed at age 11, now 25. 3 surgeries, deaf in 1 ear, hearing impaired in the other. Blind one eye -loss of one eye due to NF2. I am happy to represent NF2 BioSolutions in PA because I believe this is our best option to defeat NF2. Do not hesitate to contact me.