We want you to know that we are working from home to do anything we can to continue to support you and your families in this extremely challenging time for our country and the world. One of the biggest challenges we are hearing about is trying to keep our kids engaged in their school assignments and…
Read MoreVolunteer Spotlight: Tim E
Meet Tim and Sue! Tim is one of our amazing, out of this world, extraordinary volunteers who heads up the Madison Great Steps Walk 4NF! Tim and Sue attended the first Madison walk, hosted by Diana. There were maybe 20 people there, Tim says they don’t remember how they heard about the walk. He became…
Read MoreDIY Fundraising : MavMan Sidekicks
We love to highlight rock star fundraising teams and MavMan Sidekicks did something extraordinary in just 7 days! Kara, Maverick’s mom, and Dayna, Maverick’s aunt, did a combination of Facebook live videos and social media posts on both Facebook and Instagram to announce/promote their fundraiser. Dayna also made a short video about Maverick’s NF journey….
Read MoreFAQs for New KOSELUGO (Selumentinib) NF1 Drug
In April 2020 the U.S. Food and Drug Administration (FDA) approved KOSELUGOTM (selumetinib) for use in children over age 2 with neurofibromatosis type 1 who have inoperable plexiform neurofibromas. This is the first drug ever approved specifically for a complication of NF Type 1. Obviously this has been huge news! The process of getting this…
Read MoreDuring COVID19 Children and Adults Still Struggle with Neurofibromatosis
The hearts and thoughts of the NF Midwest staff, board, and community are with people all over the world who are struggling with COVID19 and the financial, social, and emotional issues this worldwide crisis brings with it. Neurofibromatosis can feel like such a small concern in light of the bigger issues of today, but all…
Read Morebe iNFormed about MPNSTs in NF Type 1
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…
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