My son, Gus, was diagnosed with Neurofibromatosis (NF) Type 1 as a baby. Having never heard of NF, my wife, Becky, and I did our research and quickly learned about all the horrifying physical and cognitive complications that NF can bring. And we decided to hope for the best.
When Gus was 3 years old, we received the nightmarish news that he had a racquetball-sized tumor growing in his brain. Terrified, we handed our little boy over to the neurosurgery team at Mayo Clinic. It was the hardest thing we’ve ever done. It was the longest day we’ve ever lived. We didn’t know what kind of brain damage Gus might be left with or if we’d even get our baby back at all. Although his recovery involved some scary complications, he came through and sustained no known cognitive impairments. But, as any NF parent knows, NF is a perpetual waiting game. Since we don’t like waiting, Becky and I reached out to the NF Network to learn how we could help.
I first encountered the Neurofibromatosis Research Program (NFRP) in 2015 when Kim Bischoff, Executive Director of NF Network, invited Becky and me to join the NF Network Advocacy Program in Washington, D.C. The NF Network is the leader in NF advocacy and creating and supporting communities. We have returned to Capitol Hill every year since then and now serve as mentors to new advocates, including our 12-year-old daughter, who joined us for the first time this past February.
Meeting NF patients and their caregivers has inspired me to be the best advocate I can be. I have learned how to be a better dad and caregiver, in large part, due to the fearless people I’ve met through the NF Network. I take very seriously the roles I’ve been charged to fill: I serve on the NF Network Board of Directors, its Leadership Council, the REiNS International Collaboration Council of Directors, and am a Patient Advocacy Representative for two REiNS working groups.
In 2016, I established NF North Central (NFNC), a 501(c)(3) nonprofit organization, whose mission it is to authentically educate, advocate, counsel, provide support services, and fund research initiatives benefitting those impacted by Neurofibromatosis. On a local level, NFNC strives to connect with the NF Community where we live. In 2016, Becky and I founded Rock Out to Knock Out NF, a live concert fundraiser in Rochester, Minnesota which benefits NF awareness and research funding. We are also preparing to host Rochester’s first #NFStrong event—a family-friendly 5K run/walk—this September.
As NFNC Executive Director, I have made collaboration a priority. NFNC has joined forces with the NF Network Advocacy Program, the Mayo Clinic Department of Clinical Genomics, the UW-Madison NF1 Translational Research Initiative, and the greater NF Community to help provide individuals and families access to the resources every NF patient deserves. I am pleased that NFNC’s dedication to NF Network’s Advocacy Program is helping advance NFRP research studies.
When I was nominated to participate on the NFRP peer review panel, I was anxious. My college degree is in economics, so reviewing grant proposals involving cellular molecular biology was entirely foreign to me. I had previously advocated for the allocation of funds to this program, but now was tasked with helping to assess the scientific merit of each research application and their impact on the NF community. I felt an enormous sense of responsibility—not only to my son, but to all those affected by NF. My anxiety was eased by the incredibly talented researchers and clinicians in the room. As a peer reviewer, I soon realized that my front-lines voice matters. I believe the NFRP is so efficiently run because it is managed by the DoD. It is a results-oriented program with a real return on investment that gives hope to NF patients and their families. I am inspired by the brilliant minds of the scientific community who are working to decrease the clinical impact of NF. My son’s story mattered to these people. I absolutely encourage others to be a part of the solution by serving in this capacity. This past year, Dr. Norman Sharpless, Director of the National Cancer Institute, highlighted Selumetinib—a drug that, along with others in its class, the NFRP has funded research for use as treatment—as the most exciting thing in cancer research! Dr. Sharpless has stated that “Tumors shrink, kids feel better, drug seems safe.”
Gus is 7 years old now. He loves baseball, superheroes, the Minnesota Vikings, and making people laugh. Gus does not yet comprehend what having NF means and we wish he’d never have to. I believe: advocacy raises awareness; advocacy empowers patients and caregivers; advocacy is research. For a rare disease like neurofibromatosis, advocacy is the key to unlocking new therapies and cures. Promising studies being conducted through the NFRP are absolutely vital to my family and those we serve… and I will never stop advocating for their continued funding until the day a cure for NF is found.