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.
Liz is our Outreach and Care Coordinator. She has a young adult daughter with NF1. Liz joined the NF Midwest board in 1997 and started working at NF Midwest part-time in 2012. Liz is the point person for making sure No One Fights Alone. She's available to help find resources and information...or just to talk. If you haven't heard from her yet, you probably will as she will most likely be checking in to see how things are going.
Christine is very passionate about the NF cause. Her oldest daughter had NF1 and passed away from MPNST in 2013 so she keeps her memory alive by helping others with NF. She has been a top fundraiser for Great Steps, on the scholarship committee and brings a vast background of business experience with ideas to serve NF Midwest. If you would like more information about participating in a Great Steps Walk 4NF, Do It Yourself fundraising or any general fundraising information please contact Christine. If you have a connection to a business, sponsor, or a great fundraising idea, please let her know.
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.
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.
This organization has been instrumental in spreading awareness and raising funds for those in the Midwest that suffer from Neurofibromatosis. They truly care about finding a cure. They are supportive not only to those that have NF, but their families as well. It is where my family first turned to when I was little to get the information they so greatly needed.
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.