I alone cannot change the world, but I can cast a stone across the waters to create many ripples. – Mother Teresa
NF Midwest has a small efficient staff and depends on volunteers. We also have a board of directors and a professional advisory board. If you are interested in serving in any way please contact us.
Diana has two children and a husband with Neurofibromatosis Type 1 and has been involved with the organization since 1997. She became our new executive director in 2008. Diana has a background in real estate, marketing, information technology and more. Between her now adult children and her husband, she has dealt with many of the complications of NF1. She has a real dedication to the cause and to the families and individuals dealing with neurofibromatosis and a determination to the bring a brighter future to her family and others.
Maggie has owned her small business for 10 years. She loves to use her business and social media acumen for good. While Maggie doesn't have a personal connection to NF, she shares the passion for helping others. If you would like to chat with Maggie about a fundraiser, Great Steps, or other event, please reach out! Even if it is just an idea, Maggie will be able to help you develop it into something great.
Joan Scott joined NF Midwest in the summer of 2019. She works part-time as an office assistant and all around utility player. While Joan doesn’t have a personal connection to NF she volunteered frequently in the office for quite a while and has a passion for the work and a willingness to do anything to help the NF community. Look for her helping at events or she may the one contacting you if you are in need of something from the office.
Karissa works for NF Midwest part-time and started in September 2016. She has a Bachelor's Degree in Mass Communication and Media from Arizona State University online. In addition, she has a year of schooling in social work from Illinois State University. She helps with many tasks around our busy office and helps to maintain our social media and website. Karissa is also affected by NF1 herself and has been involved in the NF community for most of her life.
Denise is a mom of a child with Neurofibromatosis (NF1) and has been involved in the organization since his diagnosis. Denise has a Bachelors Degree in Biomedical Science. She is also a licensed massage therapist and Reiki Master. Currently Denise works full time in medical billing and accounts receivable for the DuPage Eye Surgery Center. Denise looks forward to helping others and raising awareness.
Pete is currently Director of Public Relations and Marketing at Blackburn College. He has over twenty five years of experience in strategic marketing planning, identifying solutions to business needs, building organizational marketing value, and providing project management to achieve key business goals.
Pete also has a varied background in non-profit. He ran a crime commission in Eastern Iowa, which was an interagency non-profit that provided funding to various organizations throughout eastern Iowa. Pete was also executive director of the Clayville Folk Arts Guild (at a historic site west of Springfield) for three years and organized about 10 public events each year. He was also a founding member of the Summer Repertory Theatre at Blackburn and has served twelve years on the local school board.
Pete has an adult son, Sam, with NF1. In 2014, he and his family started SamJam4NF an all-day music festival in Carlinville, IL to support the NF cause.
Gordon earned his Bachelor of Business degree from the University of New Mexico and MBA from UCLA. He worked for years in finance at International Harvester, now known as Navistar. He also served eight years in the U.S. Air Force.
In his retirement years Gordon has volunteered at a number of nonprofits including the Cancer Society, U of I Master Gardner program, Geneva Historical Society, Association for Individual Development, Opportunity House and of course most notably, Neurofibromatosis Midwest.
His longtime dedication to the neurofibromatosis cause includes serving on NF Midwest’s Board of Directors in several capacities. He completed two non-consecutive terms as Board President and currently holds the position of Treasurer. In his free time Gordon enjoys gardening and the outdoors.
Dena is currently a school psychologist in the Valley View School District located in Romeoville, Illinois. She has 18 years of experience as a school psychologist. Dena earned a Bachelor of Psychology degree and a Master of School Psychology degree from Governors State University. She earned a Master of Educational Leadership degree from St. Xavier University. She earned a certificate in Special Education Advocacy from the William and Mary Law School Institute of Special Education Advocacy. Dena has a personal and professional interest in the educational implications of children with health conditions.
Dena has been involved in the NF community and fundraising for the past 15 years. Dena is married with 5 children, including her daughter, Sera who has NF1.
Lesli is a mom of a child with Neurofibromatosis (NF-1). She has been involved in the organization since 2001. Lesli is a Registered Nurse with 20 years’ experience in Hematology/Oncology nursing. She has been active in the Great Steps for NF Walks and has served on the committee for the last eight years.
Gail is a founding member of NF Midwest. She also helped establish the National Neurofibromatosis Foundation which is now known as the Children’s Tumor Foundation. She is also a long-time business owner and former member of the Peace Corp.
Charles is a sales executive and is currently Director of the Central Enterprise Business Unit at Apttus.
I recently learned I have NF1 at the age of 29. Iam blown away with how fast these tumors are growing and haven't got a clue how to start, where to begin , or if I even want to know anymore [about] this . My heart is broken.... I took pride in my appearance and being a young female it's hard to explain to anyone that these are not warts or STDs. I just need help with excepting the reality of my condition, so thank you from the bottom of my heart for reminding me I'm not alone and giving information to guide me in the right direction. I can do this because you have given me the tools to get started. Other websites send me in circles leaving me with more questions then I began with. So once again THANK YOU FOR CARING.
The resources on this site should not be used as a substitute for professional medical care or advice on Neurofibromatosis. Users seeking information about a personal genetic disease, syndrome, or condition should consult with a qualified healthcare professional.