Gregg Erickson: My Perspective as a Neurofibromatosis Parent and Advocate

Author: CDMRP

Published On: 05/14/2019

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.

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