THE NF NORTH CENTRAL STORY

Our Story

Gus Erickson was a healthy, happy baby—the little brother his two big sisters didn’t know they wanted until he was born. When he was about eight months old, his mom began to notice cafe-au-lait spots on his legs, which led to an NF1 diagnosis. When he was 3 years old, his family received the news that their little boy had a brain tumor which required immediate surgery. He made a swift recovery and now, a few years later, continues to be closely monitored by his medical team of specialists at Mayo Clinic in Rochester, MN.

This story is just one of the tens of thousands that play out in the lives of families affected by NF in our country, every day. This reality compelled Gus’ parents, Gregg and Becky, to connect with the Neurofibromatosis (NF) Network and join their advocacy efforts in lobbying for federal research funding on Capitol Hill. After learning that their home state of Minnesota and neighboring Wisconsin were not being represented by a local NF Network member organization, Gregg established NF North Central. It wasn’t difficult to recruit NF Network President—and fast friend to the Ericksons—Ryan Geier, to join the NFNC board. Ryan’s daughter, Lauren, also has NF1 and the Geier family has been a powerhouse in fundraising for NF Network and the NF Swine Project: cutting-edge Neurofibromatosis research program being conducted at the University of Wisconsin-Madison.

The connections that the Ericksons, the Geiers and countless other families across the United States have made through the NF Network are invaluable. Comprised of motivated, intelligent, compassionate, people from all over our country, The NF Network is a true family. They welcome wide-eyed newcomers with open arms and, together, work to find treatments and a cure for neurofibromatosis by promoting scientific research, improving clinical care, and providing outreach through education and awareness, all while offering hope and support to those affected by NF. It is because of this fundamental dedication to the human element of NF, that people are so drawn to the NF Network and the individualized support and guidance it provides them.

A true superhero fan, Gus likes to remind family and strangers alike that he will use his powers for good, and not evil. So now, joining forces with NF Network, Mayo Clinic, UW-Madison and the greater NF Community, NF North Central has set out to do the same. We are dedicated to growing our organization’s regional footprint so that more individuals and families may have access to the resources every NF patient deserves. We will continue partnering with NF Network’s Advocacy Program to secure the federal funding vital to advancing NF research studies, and we endeavor to bring together the brilliant, creative minds of researchers and clinicians—locally and abroad—until the day a cure for NF is found.

Welcome to NF North Central!

RESOURCES

• Webinars for those impacted by NF
• Understanding Neurofibromatosis (ebook)
• Understanding Neurofibromatosis Type 2 (ebook)

In Their Own Words