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Vanderbilt University Educational Study Seeking Young People with NF1

Dec 10, 2018, Posted in Outside Opportunities, NF1, Science

Academic underachievement is a common concern voiced by parents of children with NF1. Up to 75% of children diagnosed have poor academic achievement in various subjects, which is much higher than the percentage of children who have learning disabilities in the general population. Reading deficits are a common learning disability among children with NF1. 

In a previous research study, researchers explored what type of tutoring program was most beneficial to children and adolescents with NF1. Results from that study suggest they may benefit from a remedial reading program that involves learning the various sounds of letter combinations using a multisensory approach that emphasizes auditory, visual, and tactile processes.

Stories of NF: Michael B.

Dec 10, 2018, Posted in NF1, NF Hero

My family and I have been fighting NF together since I was a baby. I have had multiple surgeries over the years to try that make me feel as comfortable as possible. My mom also has NF. Although I am grateful for the life she and my father gave me, I don’t want kids. With the current state of the world, I don’t want to bring in a child to this world with NF. In my eyes, I think it would be a lot more difficult to be a child in this era then it was in my childhood.

Stories of NF: Layla C.

Dec 3, 2018, Posted in Community, NF1, NF Hero

We learned of Layla's NF1 diagnosis when she was only 1 week old.

Layla suffers from severe headaches; there are three growths in her brain stem and one on her spine. She also has restless leg syndrome and ADHD. She has had four eye surgeries since birth.

Johns Hopkins Researcher Seeking Participants for Study on Bullying and Cyberbullying

Nov 26, 2018, Posted in Outside Opportunities, NF1, Science

Genetic counselers at the Johns Hopkins Comprehensive Neurofibromatosis Center are conducting a survey to better understand how bullying and cyberbullying are impacting their adolescent NF patients. This research will be used to better inform their own practice, as well as to develop resources that will be available to teens, families and health care providers of those with NF1.

Call for Applications for the class of 2019 Francis S. Collins Scholars

Nov 7, 2018, Posted in Outside Opportunities, NF1, Science

The Neurofibromatosis Therapeutic Acceleration Program (NTAP) is now accepting applications for the Francis S. Collins Scholars Program in Neurofibromatosis Clinical and Translational Research. The Collins Scholars program brings together a community of exceptionally well-trained clinician scientists who will be leaders in the field of NF1 research.