My name is Johanna and my daughter was diagnosed with NF2 in 2019 when she was three 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 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 answer NF2 soon! I live in Philadelphia and would happily 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. Three 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.
Lindsay Bevevino Email: firstname.lastname@example.org
Hello, my name is Lindsay Bevevino, and my youngest son, Elliott, was diagnosed with NF2 at just six months old in July of 2021. Elliott’s early diagnosis is rare and was a complete shock to us as he is the only one in our family with this diagnosis. He was born with a Hamartoma in his left eye, which has left him mostly blind in that eye. Additionally, a recent MRI revealed that he has bilateral Vestibular Schwannoma tumors in his brain, the hallmark of NF2. As parents, the lack of treatment options leaves us feeling quite helpless. NF2 BioSolutions has become our beacon of hope in this storm. It has been incredibly challenging to come to terms with this diagnosis and all of its implications. The guidance and support we have received from other parents of children with NF2 have been our lifeline throughout these challenging times. I am honored to take on the role of NF2 BioSolutions Pennsylvania Ambassador. I hope to pay forward all of the help I have received throughout my journey by helping others in theirs. Please reach out if you need assistance, a listening ear, or direction on fundraising for this incredible organization. Together, we can find better treatments and, ultimately, a cure for NF2 so that our loved ones can live long and healthy lives!