Nicole Henwood M.D., President and CEO
Dr. Henwood is the mother of A.J. Henwood (age 7), a vibrant and loving child who was diagnosed in early 2018 with NF2. She is a physician and did work during her college years at the University of Pennsylvania’s Institute of Human Gene Therapy. Dr. Henwood has chosen to use her background to find a treatment for her son and others affected with NF2. She graduated Summa Cum Laude in 2000 with a degree in Biology from the University of Pennsylvania where she was selected for Phi Beta Kappa. She attended Weill Cornell Medical College where she received her M.D. in 2006, and she completed a residency in Anesthesiology in 2010 at the Hospital of the University of Pennsylvania.
Gilles Atlan, Vice-President
Gilles has 20 years of experience in the software industry, and currently works for SAP Labs as an Innovation Manager. Gilles’s daughter, Karen, was diagnosed at age of 6 due to a juvenile cataract. Today Karen is 11 and already has undergone 3 surgeries (2 eyes, 1 brain). Gilles grew up in France, lived near San Francisco for more than 10 years, and today is based in Israel. He holds a BSc in Mechanical Engineering from Ben Gurion University and a MSc in Computer Science from University of Manchester UK. Gilles specializes in innovation methodologies and user engagement and would like to apply these skills to grow and develop NF2 BioSolutions (NBS). Gilles strongly believes that gene therapy is the best hope for a better future for NF2 patients.
Bryan Clay, Director
Bryan is a nonprofit regional consultant with Vanguard. He works with all types of nonprofit organizations including endowments, foundations, and health care organizations to find investment solutions best tailored to meet their specific investment objectives. Before joining Vanguard’s nonprofit team, he held a variety of sales roles working with Financial Advisors and had previously been a successful entrepreneur of a local Rita’s Water Ice franchise. He is a graduate of Millersville University and in his free time he enjoys playing golf, traveling to warm destinations and spending time with his family and friends. Bryan is excited to be part of the organization so he can share his knowledge and help the organization understand the complexities of the global financial markets.
Vito Grasso, Director
Vito Grasso is the father of a daughter with NF2. He is executive vice president of the New York State Academy of Family Physicians which represents more than 6,000 Family Physicians and medical students in New York. He has a master’s degree in public administration and holds the certified association executive professional credential conferred by the American Society of Association Executives. He was executive director of the Capital District Chapter of the national Multiple Sclerosis Society for 9 years and has also served as executive director of the NY Public Welfare Association. He was also communications director for the Professional Insurance Agents Association of NY, NJ and CT. He began his career as a legislative analyst and communications specialist for the New York State Assembly. He has served on many non-profit and professional association boards. He and his wife, Susan, live in Brunswick, NY. He is the author of John Connors, Artist From Troy. He is president of the University Club of Albany Foundation.
John Manth, Director
John Manth is the father of Leah Manth who was diagnosed with NF2 in 2007 when she was just 7 years old. John and his family are dedicated to finding meaningful treatments and a cure for NF2. In addition to NF2 BioSolutions John serves on the Board of Directors of Neurofibromatosis Northeast, as well as the NF Network, where he is the Vice President. Since Leah’s diagnosis the Manth Family and Friends have raised $500,000 and sponsored 11 NF2 research studies. John is a staunch advocate for federal funding for NF research and assists in coordinating, training and mentoring NF families attending the NF Network’s annual trip to Washington DC. He has extensive experience in fund raising, non-profit organisational leadership, advocacy, and NF outreach. John, his wife Linda and Dr. Scott Plotkin co-wrote a booklet entitled “Understanding NF2” published by NF Network. He has also written articles on various NF topics. Additionally, he has presented at NF Symposiums and has facilitated many NF family and patient discussions. John teaches undergraduate courses in Violence, Global Crime, and Comparative Criminal Justice at Hilbert College in Hamburg, NY as well as a Criminal Justice Career Program to high school students. He holds a Bachelor of Arts degree in Criminology from University of Maryland and a Master of Arts degree in Criminal Justice and Education from Buffalo State College.
Chantelle Nobis, Director
Chantelle Nobis lives in upstate New York with her husband and 3 children. She is currently a middle school music and chorus teacher going into her 17th year of teaching (Bachelor of Science in Music Education and a Master’s Degree in Literacy). Her husband Peter (diagnosed in 2008/spontaneous mutation) and daughter, Amelia (diagnosed in 2015) have NF2. Her husband has a very mild case of NF2 (Vestibular Shwanommas) and her 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, intraneural perineuriomas, an additional brain meningioma, and no vestibular shwanommas, etc.) Since their diagnosis with NF2, she has made it her mission to find others going through the same disorder, and fight for a cure. She truly believes that gene therapy is the answer to curing NF2, and they are the reason she has 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. It is an honor to be added to the board of directors, and I will go above and beyond to join them in our mission to cure NF2.”
Terri Rausch, Director
Terri Rausch and her son Avery (age 24) have NF2. She considers herself lucky in that her case of NF2 is so mild; only deaf on one side with minimal balance issues and no facial nerve disfunction. Avery’s case is also mild so far. They both were members of the NIH Natural History study for NF2 from 2010 – 2015 and traveled to DC twice a year to receive their MRIs and audiology screens and other tests. Terri, along with her husband Karl, have been avid supporters of NF by raising awareness and funds for a cure through social media posts, educating their friends and family and hosting event fundraisers. Terri has served on the board of NF Michigan for several years and recently became that board’s president. Even more recently, she has joined the national board of the NF Network. Joining NF2 Biosolutions in early 2019 by becoming the ambassador of Michigan and helping to advance the mission of this group in finding a cure through gene therapy has been an exciting adventure. In the fall of 2020, Terri was added to the board of directors for NF2 Biosolutions and is engaged to help in any way she can. Terri is currently unemployed but has a background in logistics. She holds a BA from Michigan State University in Logistics and an MBA from Wayne State University.
Christopher Serle, Director
Chris is a former Navy SEAL who was injured in Afghanistan in 2012 and received the Purple Heart for his valiant service. Upon leaving the Navy, he graduated Summa Cum Laude from Old Dominion University and has chosen to continue a life of service by attending medical school at Eastern Virginia Medical school starting in August 2018. He is also A.J.’s uncle and loves him deeply. Chris has pledged to spend his life and his medical career researching and treating NF2 with the goal of one day being able to help his nephew and others suffering from the condition.
Jill Velez, Director, Secretary
Jill is an NF2 advocate for her creative and fun-loving daughter. Jill’s daughter, Laurel, was diagnosed in 2017 at the age of 10. Living in Southern California, Jill holds a Bachelor of Fine Arts in Illustration from the University of Delaware where she graduated Cum Laude, and a master’s degree in illustration from the Academy of Art in San Francisco. Jill co-owns a luxury design and printing business specializing in the billion-dollar wedding industry. Jill’s efforts focus in fundraising and patient advocacy with the determination that a cure will come for her daughter and others who suffer from NF2.
Amy Williams, Director
Amy Williams lives in Louisville Kentucky with her husband Rob and between them they have been blessed with 4 wonderful boys. Amy is a retired Dental Hygienist and decided 8 years ago to go back to the dental world where she is office manager to a prominent pediatric dental office. Amy’s son Parker was diagnosed in 2018 at the age of 19. “He is the first in my family and his Fathers family to have this diagnosis. You can only imagine our shock and disbelief when we learned of this NF2 diagnosis.
He is being seen by his team of Dr’s every 6 months for repeat brain and yearly Spine MRI’s to keep in check his bilateral Schwannoma’s, spine and peripheral tumors. He has had gamma knife radiation to his right sided tumor in August of 2018 and started Avastin in April in 2019. Currently there is no cure and I want to help change this. I believe whole heartedly in the approaches of the Dr’s, scientists, and amazing team that make up NF2 Biosolutions.” Amy is the KY Ambassador for NF2biosolutions and sends out the generous donation thank you letters from mailed in donations. “I am honored and humbled to have been approached by NF2 Biosolutions to be part of the board of directors team. I will do every thing I can to help educate , spread awareness, raise funds and to hopefully create a network of support for each other. Let’s help end NF2 together.
Elizabeth Henwood, Director
Elizabeth “Penny” Henwood is A.J.’s grandmother and shares Nicole’s vision of finding a treatment for NF2. She enjoys giving back to the community and has a particular interest in the NF2 cause. She is a public notary and has extensive organizational and office management experience.