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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.

Rare Disease Day at the NIH

Mar 2, 2018, Posted in Collaborations, Science, Synodos

By Salvatore La Rosa

On Feb 29, 2008, EURORDIS, a European rare disease organization, sponsored the first Rare Disease Day in Europe. Then the United States joined the first global observance the following year, along with 23 other countries. This year I was invited to participate at the Rare Disease Day at the National Institutes of Health (NIH), an event that aims to bring together “Patients and Researchers – Partners for Life,” as their slogan has always been.