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.
Sarah joined NF Midwest in November as the Care and Outreach Coordinator. Sarah is from the buckeye state of Ohio where she earned a degree in social work and her Ohio LSW. She has several years of social work experience and has worked in diverse areas such as mental health, family support in schools, senior services, and foster care. While Sarah does not have a personal connection to NF, it has always been her mission to help and support others in any way she can. Have a question or need an advocate in your corner give Sarah a call.
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.
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.
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.
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.
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.
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.
4 years ago, my daughter was diagnosed with Neurofibromatosis at the age of 4 months. I had never heard of it. I was given a brochure for NF Midwest from her doctor and I signed up for their symposium. Shortly thereafter, I received a call from the Director, Diana. She let me know that her husband and two children have NF as well. She asked if I had any questions, and let me know that they were there for us. I had just received shocking, frightening news about my infant child. I didn't know where to turn, and suddenly I had a place to go for answers and help. NF Midwest has been there for my family every step of the way. We are so grateful for the work they do, and proud to support it.
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.