John Manth is the NF2 representative on the Board of Directors. John’s daughter, Leah, has NF2 and he is dedicated to promoting research to find the cure. Along with his family, he travels to Capitol Hill annually with the NF Network Advocacy Program to advocate for federally funded research. John also sits on the Board of NF Northeast and he and his wife Linda have served on the Board of NF2 Advocure. The Manth family and friends have raised a half million dollars for NF2 research. 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’s degree in Criminology from University of Maryland and a Master’s degree in Criminal Justice and Education from Buffalo State College.
Rosemary Anderson has been involved with the local Michigan NF organization since 1985, the year after her son was diagnosed with NF1. She has been an active member of the NF Network for the past 20 years. Now retired from computer programming, she remains active with both local and national groups, spearheading the annual Doodle4NF celebrity art auction with assistance from her daughter, actress Gillian Anderson.
Sharon Loftspring is a mother of a daughter, now a young adult, who has NF1. She has served on the NF Network board for several years. She and her daughter participate in the NF Network’s advocacy efforts in Washington, D.C. A lawyer by profession, Sharon lives in Kansas City and is a board member of NF, Inc. Central Plains.
Michael Sheedy became the President of Neurofibromatosis of Arizona (NFAZ) in 1995 when his daughter was diagnosed with NF1. He has also served on the Board of Directors of the NF Network since 1998. With the help of many family members and friends, NFAZ has hosted summer camps for teens challenged with Neurofibromatosis and raised hundreds of thousands of dollars to Keep Hope Alive! Mr. Sheedy graduated Cum Laude from Arizona State University in 1984 with a Bachelor of Science degree in Economics and thereafter attended the University Of Arizona College Of Law where he graduated in 1987. Additionally, in 1994, Mr. Sheedy graduated from an FAA approved pilot ground school and passed the FAA Private Pilot Airplane examination. Following a 28 year career as a civil trial attorney, Mr. Sheedy now serves as The Director of Risk Management for Salt River Materials Group, a cement and aggregates company located in Arizona
Cheri Stewart has been volunteering for the NF communities for the past 20 years. She became involved with neurofibromatosis after meeting her husband's Aunt, who physically presented with NF1, but seemed to know very little of the condition. In a search for some of the answers her Aunt was looking for, Cheri became concerned, driven really, by the fact that anyone could live all of their life with a disease and yet struggle in simply finding avenues to learn about NF. Those first few questions, 20 + years ago, led to becoming an NF Support Coordinator in WA state, later the local President for WSNF, and currently the President of the NF Network. Cheri attended college at Black Hills State and today, works with the Social Security Administration as a claims specialist for disability.
Our journey with NF1 in began 1996 and we quickly tried to wrap our heads around this strange sounding disorder. While education is important, it also can lead to unneeded stress or worry. Try to avoid dwelling on the “what if’s” and address things as they arise. We have made huge advances in the care and expertise for NF in Michigan and beyond. Our goal as a board is to provide support, awareness and fundraising for research, grants and care for the NF Community. Currently I am serving as the President of NF Michigan and my wife Shelley is Vice President. Our son with NF was diagnosed with an MNSPT last September 2016 and miraculously as of May 2017 is in remission.
Linda Yew has a daughter with NF1, and has been an employee of NF Northeast in Massachusetts since November 2006. She has served as a peer reviewer on the Consumer Panel for the DOD’s NF Research Program, and travels to Washington DC annually as a member of the NF Network Advocacy Program. Linda has served on the NF Network Board since 2009.
Kim Bischoff is the Executive Director for the national Neurofibromatosis (NF) Network. She became involved with the Neurofibromatosis patient advocacy groups when her daughter was diagnosed with NF in 1985. Since that time has had many opportunities to speak with and organize events for families across the country dealing with Neurofibromatosis. An active NF Advocate for federal funding of NF research. Serves as a consumer reviewer on the Programmic Panel for the CDMRP NF Research Program, an external advisory body that recommends an appropriate vision, makes funding recommendations on applications submitted to the program. Kim has used her passion for improving the quality of life for individuals living with NF when giving testimony to the Senate and House appropriations committees. She recruits and mentors grassroots volunteers to join into the national NF Network Advocacy Program to give individuals with the genetic condition of neurofibromatosis a voice on Capitol Hill.
Yvonne began working for the Neurofibromatosis (NF) Network in January 2015 as the Walk Program Coordinator, together with the local Walk Chairs, she has helped them organize 14 Walks and raise resources for research, treatments and support for all those affected by NF. Her favorite part of the job is attending the Walks and meeting individuals and families from across the country. She also works with the NF Network Advocacy Program visiting Capitol Hill each year to educate Congress on the urgency of federal dollars spent on Neurofibromatosis (NF) research.
Lora joined the Neurofibromatosis (NF) Network as Administrative Assistant in February 2017. She came to the NF Network eager to utilize her 15 years experience in non-profit organizations with the NF Network. Lora's role is to provide administrative support to the Executive Director, Kim Bischoff, and Program Coordinator, Yvonne Glass.
Jeff became part of the NF community when his daughter, Emma, was diagnosed with NF at the age of nine months. Upon learning of Emma’s diagnosis, he put his talent and and experience in the world of entertainment to use to raise awareness for the disorder by founding the NF Hope Concert in 2011. The concert has grown every year, raising funds for NF Network’s advocacy and patient support programs and teaching hundreds every year about NF. He has served on the organization's national board of directors and been a part of the NF Network Advocacy Program since 2012, and in 2016 became member of the Advocacy Program’s Leadership Council. Like all the board members, his personal connection to NF inspires him to do as much as he can to make a difference in the lives of the 120,000 people living with NF in this country.
I am a PhD student in Health Services Research at Boston University and a senior clinical research coordinator in the Neurofibromatosis Clinic at Mass General Hospital. My primary research interests are access, quality, and coordination of care for patients who require specialized, multidisciplinary care teams. My disease area of focus is currently rare genetic diseases, including the neurofibromatoses. Other research interests include patient-reported outcomes and quality of life assessment. Methodologically, I am especially interested in mixed-methods and patient-centered approaches. For the Neurofibromatosis Network I write the Network Edge newsletter. Published three times per year, this newsletter summarizes and interprets recently published research on neurofibromatosis and schwannomatosis for a lay audience. I also help develop other advocacy materials as needed, including the yearly Military Benefit. This document is used to advocate for the continued support of the Neurofibromatosis Research Program within the Department of Defense's Congressionally Directed Medical Research Program.