Hello New York!!!
My name is Chantelle Nobis. I live in upstate New York with my husband and 3 children. My husband Pete (diagnosed in 2008) and daughter, Amelia (diagnosed in 2015) have NF2. My husband has a very mild case of NF2 (vestibular Shwanommas) and my daughter has what seems a very rare, more unpredictable case (golf ball sized malignant brain tumor meningioma (removed 2015), spinal tumors, cataract, cafe au lait, no vestibular shwanommas, etc.) Since their diagnosis with NF2, I have made it my mission to find others going through the same disorder, and fight for a cure. I truly believe that gene therapy is the answer to curing NF2, she is the reason I have decided to join and support NF2 BioSolutions.
I look forward to meeting and working with other families affected by NF2, so we can educate, spread awareness, and fundraise for research and a cure. “Alone we can do so little. Together we can do so much.”
Please contact me today at Chantelle@NF2biosolutions.org
Greetings New York State!
My name is Matthew St. Pierre
. I reside in Upstate New York’s Capital Region with my fiancé, Rebecca Grasso.
Rebecca was diagnosed with NF2 at the age of 19 in 2010. Like with so many others, this disease has rendered her deaf and with severe balance issues. She has gone through several vestibular schwannoma (VS) resection surgeries.
Through all of this, Rebecca fought her way to achieve a Doctorate in Physical Therapy (DPT) with high honors and continues to achieve success in her career as a top-notch physical therapist. I could never accurately describe how proud I am of her better than simply saying that she is my heroine.
For the love of my life and for all those who suffer from this horrible disease that is Neurofibromatosis Type 2, I will continue the fight.
As a native to New England, I look forward to meeting and collaborating with other families within New York State and New England, who have been affected by NF2 to spread awareness for this disease and continue the fight for a cure.