3 – Leah Manth: Leah is a beautiful, intelligent 22-year-old woman who has neurofibromatosis type 2 (NF2). Leah currently has several tumors in her brain, spine and throat. She has endured 14 major surgeries in the past 11 years, is currently deaf in her right ear, has facial paralysis, balance issues, and a cervical spinal fusion.

When Leah was diagnosed over 14 years ago, there were no effective treatments for NF2 other than surgery. Because of growing awareness and research funding, Leah now receives Avastin and brigatinib, both chemotherapies that, through research and the lengthy process of drug screening and clinical trials, are now available treatment options for certain types of NF2 tumors.

Leah graduated from Niagara University in May 2022 and will attend Roberts Wesleyan College to further her studies in their Masters of Social Work Program.  She is an active NF fundraiser, and for the past 10 years has traveled to Washington, DC and advocated to Congress for increased federal funding for NF research. Leah is an avid outdoorswoman and enjoys hunting, fishing, kayaking, and hiking. Anyone who meets her is amazed at her courage and positive view on life. Leah is truly an inspiration to everyone who meets her.

4 – Joseph Brayman: Joseph was diagnosed with neurofibromatosis type 1 (NF1) as a young child. His entire family has been affected by NF, including Joseph, his three brothers, and his mother. Thankfully, medical treatments have come a long way over the years. His brother Peter had tumors on his skin and was bandaged at school as a youth, so he would not be bullied or have the tumors injured. This would not be the case today, as awareness and better treatment options for NF are continuously improving. Peter went on to college at Buffalo State and was a trained EMT. He did his best to live a productive life.

Presently, Joseph and his two younger brothers, Brian and Scott, are managing their NF. Both Brian and Scott live in a group home in Edmeston, NY, due to having developmental disabilities.  Joseph has been seeking medical care in Boston for treatment of his NF symptoms. He has not let his learning disabilities stop him. He tries to make the most out of life and enjoys spending time geocaching, hiking, camping, and networking with others who have NF. Joseph finds genealogy fascinating and spends much of his time researching his family’s history.

5 – Miguel De Grazia: Miguel is a very special young man in his twenties.  Born with neurofibromatosis type 1 (NF1), his medical and educational needs were unclear. Initially in foster care, his parents were informed he would need medical and supporting services throughout his life. Each stage of his development was celebrated, and each medical hurdle was met with a sense of relief. With additional medical and educational services, Miguel successfully completed high school and graduated from Quincy College in December 2021. Despite struggling with online portals and classes, as most students did during the pandemic, he completed his coursework while projecting a zeal for life.

Miguel continues to excel and amaze us and works part-time. He is looking at his options for attending two more years of college. He is committed to his family, his job, and his church. He continues to help people in need at food banks, and those in our most vulnerable sectors, the disadvantaged, the elderly, and children. He is passionate about our society, addressing what is right and just in our world, which will forever amaze us.  His parents, extended family, and friends understand that NF1 doesn’t need to stand in the way of leading a good life. NF has affected Miguel throughout his life, but never tarnished him or made him feel different.  He is a brave man and continues to acknowledge his support for other people affected by NF and reads medical updates on its progress towards a cure someday. Miguel represents one of the many faces of NF1, and that having NF1 should not limit setting sky-high goals.

6 – Elizabeth Hubbard: Elizabeth was born with Neurofibromatosis type 1 (NF1) and diagnosed at around age three. When she was diagnosed, her parents were given a lot of “she won’t this” and “she will this.” Early on, it was clear that she would need some extra support in school, and even with several support systems set up, she still struggled both academically and socially. Tumors developed on her face when she was young and she would try to hide them. 

Once she found herself settled into college at Landmark, a specialized school for students with learning disabilities, she finally started to come into herself. She is currently working as a Pharmacy Technician and studying to grow further in the field.