When Gregg and his wife, Becky, learned their son has Neurofibromatosis 6 years ago, they took a common first step for parents after receiving an NF1 diagnosis: they Googled “NF”. Online search results revealed imagery of patients with a relatively high burden of cutaneous neurofibromas (cNFs).
It is quickly becoming clear that “rocking out” to raise awareness and research funds for neurofibromatosis actually works. And it’s a whole lot of fun!
More than 80 people attended the University of Wisconsin’s inaugural NF1 Symposium May 3. “It was a truly fitting way to kick off NF Awareness Month,” said Ryan Geier, a member of the NF Board of Directors.