NF Midwest has had a very important article written about Malignant Peripheral Nerve Sheath Tumors (or MPNSTs) in Neurofibromatosis Type 1. MPNSTs are cancerous and often aggressive. They develop in plexiform tumors and are believed to occur in approximately one out of ten people with neurofibromatosis type 1. It is very important that people with NF Type 1 be aware…
Read MoreGastrointestinal Tumors in NF Type 1
Dr. James Tonsgard, MD, of the University of Chicago, graciously contributed this article. The article is an overview of Gastrointestinal Stromal Tumors (GISTs), which are one of the most common tumors in the GI tract. They can occur in the stomach, small intestine and large intestine. These tumors can produce bleeding which the patient can…
Read MoreTeeUp4NF TopGolf
We could have not had a more perfect day for our TeeUp4NF event at TopGolf Naperville! We had 150 attendees, which is almost a full level, so you can bet we are going to aim to fill that baby next year! We had so many awesome raffle baskets and prizes, a hoppin’ 50/50 raffle, yum-town buffet…
Read MoreDIY Fundraising Event-Hoosier Crane
We get asked all the time, “What is a DIY fundraising event?” Well here is a perfect example of one! The wonderful folks at Hoosier Crane in Indiana contacted us about being the beneficiary non-profit for their annual Employee Holiday Party. This year’s theme was Casino Night and what until you see the photos, it looks like…
Read MoreNF 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 be used to design, manufacture and test potential gene therapy vectors for Neurofibromatosis Type 2. Dr. Katharina Meijboom, a postdoctoral researcher, is heading up the project. Her…
Read MoreArticle: 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 in the United Kingdom that compared 75 children with neurofibromatosis type 1 to their 16 unaffected siblings to determine if fatigue was more…
Read More2019 Scholarship Recipients
In 2019, NF Midwest awarded $1,000 academic scholarships to ten adults affected by neurofibromatosis or schwannomatosis. This is the fifth year for NF Midwest’s scholarship program which was piloted with funds from a charitable trust left to NF Midwest by Frances and Irma Napolilli. The program awards scholarships to students from our service area who…
Read MoreJesse’s Clinical Trial Experience
In 2017, I became involved in a clinical research trial through Medical College of Wisconsin for benign cutaneous neurofibromas. Being a part of a research trial was driven by the lack of research and progress for neurofibromatosis, as well as a desire to assist the NF community with moving forward in innovative ways. At the…
Read MoreMeet Sera, NF Midwest Area Clinical Trial Participant
Sera has a tumor that runs the length of her arm, all the way from her hand up to her shoulder. This inoperable tumor has caused her extreme pain as well as disfigurement. Diagnosed with Neurofibromatosis (NF) Type 1, fifteen-year-old Sera has had to endure many trials in her young life. However, Sera is now…
Read MoreBIG NEWS: Drug up for FDA Approval for NF1 Plexiforms
Big news just hit…though it has been expected! Many of us have been following the success of the drug selumetinib in treating people with neurofibromatosis and plexiform tumors and it was just announced that AstraZeneca and Merck & Co., Inc. has now applied to the US Food and Drug Administration (FDA) for approval of the…
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