Neurofibromatosis: A Portrait of Nebraska

Portraits have always had a powerful grasp on my imagination. Studying the history of portraiture techniques has allowed me the ability to begin to integrate those concepts into relevant contemporary narratives. My son Henry's diagnosis has been the motivation behind my series of portraits "Many Faces of Neurofibromatosis (NF)". Through this series of paintings, I am the conduit, transforming genetic complications into something secondary and portraying the individual personalities first. Using social media as a connection, I hope to raise funds, educate, and ideally find a cure for NF.

Starting in 2019, I began traveling to Washington, D.C. to advocate for federal research money through the Congressionally Directed Medical Research Program (CDMRP). NF is one of many disorders/diseases that make up this program which is under the Department of Defense (DOD) budget. I learned quickly that our elected officials are bombarded daily with these types of appointments and "asks" so sharing very long stories was not going to be something that would stand out. It isn't that our elected officials are not sympathetic, it is that they are busy.

The NF portion of the CDMRP has been included since 1996 and since its inception no elected official from our state has ever signed the letter to fund it. I decided that by sharing cohesively painted portraits of Nebraskans living with NF I might be able to at least visually sustain their attention and have a memorable meeting. The first question I am always asked is "How does this impact my constituents?" I let my own representative know that NF was the most common genetic disorder he had never heard about and that funding research for NF actually means helping millions of others exponentially as NF manifests itself in different ways leading to research that assists others suffering from other conditions. During my meeting with him, the NF Clinic called to let me know the my son most likely needed brain surgery and we were to come to St. Louis that same week for an MRI to confirm it. I flew from D.C back to Omaha, taught my painting class and then drove my son down to St. Louis where we received the news that if Henry did not get surgery, his brain tumor might render him paralyzed. The timing of the phone call was surreal.

In 2019, Nebraska received its first NF Congressional signer, Don Bacon. I will continue to advocate for those living in Nebraska who will benefit from these federal dollars for future clinical trials and experimental surgeries.

The charcoal drawings on display were all done right before the pandemic and done from life sitting with the person in his or her own home. They take about 2-3 hours to complete. The oil paintings are done from photographs and take much longer.