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Neurofibromatosis Midwest

DEDICATED TO SUPPORT, EDUCATION AND HOPE!

Archive for the “Learn About Neurofibromatosis” Category

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Help Research: Stay in Touch With Your NF Clinic

It is VERY important to visit your “NF clinic” regularly, but if  can’t and it has been a while, PLEASE try to provide that clinic an update of your condition, especially if there have been changes in your health. Having an accurate database of how individuals with NF are affected is important for knowledge Read the Rest…

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Adaptive Behavior in Young Children with Neurofibromatosis 1

NF Midwest has been funding cognitive studies of young children with NF for the last two years. These studies have been lead by Bonnie Klein-Tasman at the University of Wisconsin-Milwaukee. This past fall we saw the results of these studies with the publications of two journal articles by Dr. Klein-Tasman and Read the Rest…

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NF2 Symposium Transcript from J. Kissil, PhD

At NF Midwest’s annual family symposium held on October 12, 2013, Dr. Joseph Kissil from the Scripps Institute in Florida spoke about current research on the identification and development of therapeutic targets in neurofibromatosis type 2. As part of our continuing effort to keep the neurofibromatosis community iNFormed we have published the Read the Rest…

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Socialization Issues in Neurofibromatosis-1

Frequently some children and adults with neurofibromatosis type 1 have problems with socialization and making friends. At NF Midwest’s annual symposium on October 12, 2013 we invited Dr. Scott Hunter from the University of Chicago to address this issue and he gave us a wonderful presentation on Socialization in NF1: Why they occur and Read the Rest…

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Webinar Recording – The Genetics of Neurofibromatosis Type 2

The NF Network presented a captioned webinar on “The Genetics of NF2″ in June 2013. The presenter was renowned UK Geneticist, Dr. Gareth Evans. Dr. Evans practices at St. Mary’s Children’s Hospital in Manchester, where he is also is the head of the NF2 Clinic. He has a wealth of experience with NF2 and currently Read the Rest…

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Video – Our 2013 Symposium Inspirational Speaker

We are very excited to have a special speaker scheduled for 2013 NF Family Symposium coming up on Saturday, October 12th. DeJuan Evans has NF1 and is an MPNST survivor. More importantly, he is an NF Hero with muscular arms the size of large tree trunks. He not only proves that MPNST can be fought, Read the Rest…