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.
The UW Neurofibromatosis Clinic and the patient population it serves has grown considerably over the past five years. In light of that growth, it became clear that a forum was needed in order to provide accurate medical information.
“Unfortunately, the NF community often at best gets incorrect information and at worst receives no information at all,” Geier said.
The UW NF Clinic and the newly formed NF North Central organization worked together to host this event featuring Dr. David Gutmann from Washington University NF Center in St. Louis, Missouri.
“The NF Network could not be more proud to have participated in UW’s inaugural NF Symposium,” Geier said. “Our commitment to advocate on behalf of the NF community continues to drive partnerships with the medical community and it is with great pride that our partnership with the University of Wisconsin NF Clinic contributed to serving those who are forever a part of my NF family.”
Dr. Neha Patel, director of the University of Wisconsin NF Clinic, worked with Dr. Gutmann and members of NF North Central to pull together a panel of both medical experts and community resources so those affected by NF could actively engage in their own education.
“The number of questions that our NF families asked during the Q&A portion of the event clearly indicate just how much our NF community craves accurate information,” Geier said. “Dr. Gutmann’s keynote address coupled with a presentation that outlined the advancements of cutting edge research lead by Dr. Dhanansayan Shanmuganaayam at UW left those in attendance with a feeling of hope and excitement for a future which is currently unpredictable for those with NF.”
Attendees included physicians with backgrounds in genetics, oncology, and pediatrics as well as representatives from local and national community and charitable organizations, including a representative from Children’s Tumor Foundation and Kim Bischoff, executive director of the NF Network.
NF North Central, the newest member organization of the NF Network, is dedicated to serving those in the Dakotas, Minnesota, and Wisconsin.
“It was important to NF North Central president Gregg Erickson that this type of event be accessible to anyone and everyone who wanted to attend, so NF North Central agreed to fully fund the event not only this year, but in 2018 as well,” Geier said.