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Neurofibromatosis Network Science Column
The Neurofibromatosis Network, NF Midwest’s national affiliate, has just unveiled their new science column called The Network Edge which will provide a summary of recent highlights from NF research...
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Neurofibromatosis Network Edge Volume 2
Check out the newest edition of the Network Edge provided by the Neurofibromatosis Network, NF Midwest’s national affiliate. This science column provides a summary of recent highlights from NF...
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Video – Tumor Suppressor Research
A video released in January 2013 by the Congressionally Directed Medical Research Program (CDRMP) highlights the work of Dr. Karen Cichowski, Brigham and Women’s Hospital, on NF1 tumor suppression. Dr....
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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...
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NF2 Symposium Transcript from Amanda Bergner, MS, CGC, Johns Hopkins,
One of the presentations at NF Midwest’s annual family symposium held on October 12, 2013, was by Amanda Bergner from Johns Hopkins in Baltimore. Ms. Bergner spoke about a quality of life study on...
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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...
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Making Connections for NF1: Online international NF1 patient registry
It can be challenging to gather information from enough people for neurofibromatosis type 1 research. Having a large number of participants is critical because it allows researchers to see patterns in...
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NF Midwest Funded Research Chosen as a Top Poster at NF Conference
We are proud to learn that Christy Casnar, a collaborator on an ongoing study that NF Midwest has funded for several years, had her research poster chosen as one of the top 3 in the clinical category...
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Volumetric Measurement of Tumors in Neurofibromatosis
At NF Midwest’s annual symposium in October 2014 we invited Eva Dombi, MD, from the National Cancer Institute to present information about how a newer technology called volumetric measurement is used...
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Neurofibromatosis Research Helping Scientists to Understand Autism
People with neurofibromatosis type 1 have a higher incidence of many different complications. Tumor growth and learning disabilities are especially prevalent, but NF1 also causes higher rates of bony...
View ArticleArticle: Study Shows More Fatigue in Neurofibromatosis Type 1
An interesting article was just published in the Journal of Paediatric and Child Health called “Perceived fatigue in children and young adults with neurofibromatosis type 1”. This was a small study done...
View ArticleNF Midwest Collaborates to Fund NF2 Gene Therapy Research
NF Midwest, NF Northeast and NF2 BioSolutions have joined forces to fund an NF2 Gene Therapy Research Study at the Mueller Lab at the Gene Therapy Center, UMass Medical School. This $65,000 grant will...
View ArticleWe Need Your Personal Letters for Congress
In February, NF Midwest staff and volunteers will once descend on Washington DC along with other NF organizations to ask our Senators and Representatives to fund NF research through the Congressionally...
View ArticleUniversity of Wisconsin Looking for 4 to 6 Year Olds with NF1
Bonnie Klein-Tasman, PhD and her team at the University of Wisconsin in Milwaukee are seeking children ages 4 to 6 with neurofibromatosis type 1 to participate in a study on attention difficulties in...
View ArticleResiliency for NF Study for Adults
The Family Center for Neurofibromatosis and the Integrated Brain Health Clinical and Research Program (IBHCRP) at the Massachusetts General Hospital are conducting a research study to compare 2...
View ArticleAdolescents Resiliency with NF Study
The Family Center for Neurofibromatosis and the Integrated Brain Health Clinical and Research Program (IBHCRP) at the Massachusetts General Hospital are conducting a research study to compare 2...
View ArticleNew Survey for Adults Neurofibromatosis or Schwannomatosis-Study CLOSED
THIS STUDY HAS BEEN CLOSED BY THE RESEARCHERS. THANK YOU ALL WHO PARTICIPATED!!!! Researchers are looking for adults with neurofibromatosis type 1, neurofibromatosis type 2, or schwannomatosis to...
View ArticleNew Study – Improving Peer Relationships in Teens with NF1
Are you interested in participating in a new study to examine the effectiveness of a telehealth group for improving peer relationships for teens with NF1? Our friends with the University of Wisconsin...
View Article20 Million Secured for NF Research!
We did it! We’re pleased to announce that $20 million in federal funding has been secured for the Neurofibromatosis Research Program through the Congressionally Directed Medical Research Program...
View ArticleNF Midwest Co-Funds New NF2 Gene Therapy Project
Thanks to the support of our donors, NF Midwest is proud to be one of four NF organizations collaborating to fund a new NF2 Gene Therapy project. NF Midwest, NF2 BioSolutions, NF Northeast, and NF...
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