Stuart Gilkison

Photos and text used with permission of
Stuart Gilkison.

Stuart Gilkison was diagnosed with Neurofibromatosis Type 1 (NF1) at a young age. His physician had just attended a seminar through the National Institutes of Health (NIH) on NF, leading him to put Stuart through a litany of tests, which resulted in the diagnosis. Stuart considered his case to be mild. He had a few café-au-lait spots removed that he believes are still included in a tissue study at NIH. Throughout his school years, he had some struggles with learning disabilities, and he had numerous routine checkups and testing with his neurologists on a yearly basis. During his teenage years, the neurofibromas began appearing more frequently on his arms and mid-section, which he still considered to be a mild manifestation of his NF1. However, in his mid-30s, his vision began to be affected from a right frontal meningioma that had to be surgically removed shortly after diagnosis. He has since had a second surgery to remove his post-surgical hardware due to infection. He also has seen his neurofibromas increase in number, including many in his small intestine, causing chronic intestinal pain.

Despite his chronic pain, Stuart is actively involved with two NF advocacy organizations: The Littlest Tumor Foundation out of Appleton, Wisconsin and the Meningioma Mommas out of Littleton, Colorado. He feels very "fortunate to have found local and smaller organizations that would help kids in a way" that wasn't available to him when he was growing up. Meningioma Mommas, even though not limited to NF advocacy, has offered Stuart the chance to help others with their brain tumor journey and link with other individuals with NF. He also has a family foundation that has helped to support the Littlest Tumor Foundation.

Stuart learned about the Neurofibromatosis Research Program (NFRP) through his advocacy work with the Littlest Tumor Foundation. Prior to learning about NFRP, he was unaware of what NFRP had to offer to the NF community in the areas of research and support. After learning about NFRP, and with the help of friends at Littlest Tumor Foundation, he joined NFRP as a consumer reviewer. He feels his experience as a consumer reviewer was wonderful and that even as a consumer, his "voice was just as important as any other person in the room."

During application review, he was able to "draw from personal, as well as past professional experiences to add input on the proposals at hand." Stuart had a unique perspective while serving as a consumer reviewer, as he is a person actively living with the disease. While reviewing proposals, he found that they stirred up a lot of emotions, but those emotions were what allowed him "to be fully invested in the process of grading the applications." Stuart feels that these emotions will be the impetus to drive other consumers living with NF to participate in the review process.

Prior to working with NFRP, Stuart didn't have much faith in the scientific community and their attempts at lessening the clinical impact of NF. But after his experience, he described it as "refreshing to be able to sit with professionals that have dedicated their lives to trying to solve the NF puzzle" that he deals with on a daily basis. Stuart is very excited by the direction NF research is heading, especially since the proposals are not only geared toward the medical aspects of NF, but also the overall quality of life of those affected by NF.

In addition to his advocacy work, Stuart utilizes his Master's Degree in Rehabilitative Counseling as he runs a healthcare consulting firm in Madison, Wisconsin, which includes providing expert witness testimony in court related to disability and employment. Outside of work, Stuart enjoys taking improvisation classes and spending time with this wife of 21 years, Jessica, and their daughter, Piper.

Last updated Monday, January 3, 2022