NF Central Plains: iNForms
Author: Sharon Loftspring
Published On: 04/21/2018
The event drew people from Oklahoma, Missouri and Kansas who wanted to learn more, ask questions, and build community. The Day of iNFormation was hosted by NF Central Plains and was held in Kansas City on April 21, 2018. This year, the program featured outstanding speakers covering a wide range of relevant topics:
Dr. Stephanie Morris, a pediatric neurologist from the NF Center at Washington University, on the connection between NF1 and autism;
Dr. Kyle Sweeney, a Kansas University surgeon specializing inmusculoskeletal oncology, on the surgical removal of MPNST (malignant
peripheral nerve sheath tumors);
Michelle Wild, CEO of Brain Education Strategies & Technology, on apps for those with learning disabilities; and
Scott Adams, founder of the Special Needs Trust Center, on maintaining eligibility for governmental benefits.
New this year was a parent-patient panel during which “real people” shared
their stories and answered questions from the audience with candor and emotion. In addition, there was a brief presentation about the importance
of advocacy for federal funding of NF research.
The event ended with an inspirational talk by David Evans, an NF patient, who reminded us that we should speak up in the face of discrimination and that NF should not limit us in any way.