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Stories of NF: Alex S.

Mar 21, 2018, Posted in NF Hero, NF1

Alex was diagnosed with NF1 when he was a couple of months old. He started developing cafe au lait spots and we were sent to Emory Genetics in Atlanta, GA. He had his first MRI when he was 6 months old and it showed the UBOs (unified bright objects); later he developed lisch nodules.

Understanding the IEP/504: An Interview with School Psychologist Jim Hubbard

Mar 13, 2018, Posted in Awareness, Community, NF1

The following interview was conducted on November 13, 2017 with Jim Hubbard, a school psychologist and counselor, by Kate Kelts, RN, BSN, patient support coordinator for the Children’s Tumor Foundation. Jim has 33 years of experience as a school psychologist working with children and families, as well as living with NF1 himself. This resource is meant to serve as a resource for parents beginning the process of advocating for their child’s education.

State Representative Robert Cole Sprague Presents First Signed Law Declaring May as NF Awareness Month in the State of Ohio

Mar 12, 2018, Posted in Awareness, Latest News, Press Release

Whereas dozens of states approve proclamations each year, Governor John Kasich signed first law in the country recognizing awareness of genetic disorder

Vilcek Foundation Seeking Applicants for Biomedical Research Award

Mar 7, 2018, Posted in Awards, Outside Opportunities, Science

The Vilcek Foundation is currently seeking applicants for the 2019 Vilcek Prizes for Creative Promise in Biomedical Science. We are accepting applications from foreign-born scientists age 38 and under from now through June 11, 2018. Three winners will each receive a $50,000 unrestricted cash prize and will be honored at an awards ceremony in New York City in April 2019.

Stories of NF: Kellee F.

Mar 7, 2018, Posted in NF Hero, NF1

I was 16 years old when I was diagnosed with NF1, following a series of doctor appointments over the course of four years because of chronic headaches. My father was diagnosed before I was born and now I was being diagnosed with it.