Ryan Geier serves as the board President for the national Neurofibromatosis Network. Ryan first learned about Neurofibromatosis when his daughter was diagnosed at 18 months old. Initially, Ryan struggled to understand the diagnosis and found it difficult to talk about with friends and family. It wasn’t until he connected with the NF Network that he found a way to come to terms with a life that now included NF. In 2012, Ryan attended a local walk and was overwhelmed—not only by the outside support his family received—but, also, by the connection he felt to other families affected by NF. Since then, Ryan has been an active member of the NF community, advocating for NF research in Washington, D.C., as well as helping to facilitate cutting-edge NF research at the University of Wisconsin-Madison.
John Manth is the NF2 representative on the Board of Directors and currently serves as the Vice President. 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.
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 Central Plains.
In addition to his role of Treasurer on the Board of the national Neurofibromatosis Network, Gregg is also the founder and Executive Director of Neurofibromatosis North Central, serving the NF communities in MN, WI, ND, SD, MT and WY. Gregg also plays a vital role in the NF Network Advocacy Program, as well as serves on the REiNS International Collaboration Council of Directors and is a Patient Advocacy Representative for two REiNS working groups. He has also served as a Consumer Reviewer for the U.S. Army’s NF Research Program Peer Review Panel under the Congressionally-Directed Medical Research Program. Gregg and his wife Becky fight for a cure for their son with NF1. Servants of the greater NF Community, they are focused on forging dynamic collaboration among clinicians, patient advocacy groups & medical researchers to speed the discovery of answers for Neurofibromatosis.
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.
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
Terri Rausch and her son Avery 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 has served on the board of NF Michigan for several years and recently became the board’s president. She is also involved with NF2 Biosolutions, a non profit that got its start in 2018 and seeks a cure for NF2 through gene therapy and immunotherapy. Serving as a member of their board and as the ambassador for Michigan, she is honored to be aiding the good work this group is doing to find a cure for NF2. Terri, along with her husband Karl, have been avid supporters of NF by raising awareness and funds through social media posts and hosting fundraisers. 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.
Cheri Stewart has been volunteering for NF communities for over 20 years. She became involved with neurofibromatosis after meeting her husband's aunt with NF who 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 finding avenues to learn about NF. Those first few questions, 20+ years ago, led to becoming an NF Support Coordinator in the state of Washington, later the local President for NF Northwest, and currently a board member for the national Neurofibromatosis Network. Cheri attended college at Black Hills State and today works with the Social Security Administration as a claims specialist for disability.
Sharon Klein is the Executive Director of Neurofibromatosis Northeast. With more than 15 years of non-profit fundraising experience, she brings a focus and passion on finding cures for rare diseases. She has held numerous leadership roles in executive alignment and collaboration, fundraising, management, and patient advocacy and programs. In 2018, Sharon decided to switch gears from working at a national nonprofit to a startup organization. Her curiosity about science led her to a senior leadership role at the Institute for Protein Innovation (IPI), a group focused on creating synthetic antibodies and creating new therapies for people with rare diseases. Having been the only non-scientist at IPI, she harnessed the opportunity to teach the lab team about fundraising, and how the work in the lab could be translated into a story that would motivate donors. Her insight from her past experiences brings a fresh perspective and new insight to the Neurofibromatosis Network Board.
Yvonne began working for the Neurofibromatosis Network in January 2015 as the Walk Program Coordinator. Together with the local walk chairs, she helped organize 14 walks and raise funds for research, treatments and support for all those affected by NF. Yvonne currently serves as the National NF Network Ambassador, spreading awareness about neurofibromatosis and representing the NF Network at the local and national level. Yvonne 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.
Kim Bischoff from Northern Illinois is the Executive Director for the national Neurofibromatosis (NF) Network. She became involved with neurofibromatosis patient advocacy groups when her daughter, Jennifer, was born with NF1 in New Orleans, LA in 1983. Since that time, she has had many opportunities to speak with and organize events for families across the country affected by neurofibromatosis. An active NF advocate for federal funding of NF research, she serves as a consumer reviewer on the Programmatic Review Panel for the CDMRP NF Research Program - an external advisory body that 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.
Breanna joined the Neurofibromatosis Network team in July of 2018 as the Marketing and Event Coordinator. For the past few years, she has played an essential role in connecting our NF communities through the #NFStrong walk program, Coffee Chats with the NF Network, themed Teen Game Nights, and more. Breanna has also advocated alongside her peers participating in the NF Network Advocacy Program, representing and sharing the stories of the NF families and individuals in Illinois and Tennessee. Her favorite part of working with the NF Network is building new relationships across the country and finding opportunities to build, connect, and grow our communities as we continue our efforts for better treatments and a cure to end NF.
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.