News/Blog

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DIY Fundraising : MavMan Sidekicks

Posted By NF Midwest | On April 28th, 2020

We love to highlight rock star fundraising teams and MavMan Sidekicks did something extraordinary in just 7 days! Kara, Maverick’s…

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FAQs for New KOSELUGO (Selumentinib) NF1 Drug

Posted By NF Midwest | On April 24th, 2020

KOSELUGO FAQS In April 2020 the U.S. Food and Drug Administration (FDA) approved KOSELUGOTM (selumetinib) for use in children over…

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While the Kids are Home Learning You Should Too

Posted By NF Midwest | On April 20th, 2020

We want you to know that we are working from home to do anything we can to continue to support you…

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During COVID19 Children and Adults Still Struggle with Neurofibromatosis

Posted By NF Midwest | On April 6th, 2020

The hearts and thoughts of the NF Midwest staff, board, and community are with people all over the world who…

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COVID19 Stimulus Packet Rebates FAQs

Posted By Diana Haberkamp | On March 27th, 2020

Below are answers to many of the frequently asked questions regarding the COVID stimulus packet. We hope this helps our…

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Simple Update and Positive Message

Posted By NF Midwest | On March 20th, 2020

Like the rest of the world, the staff and board of NF Midwest has been busy understanding and planning for what may…

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be iNFormed about MPNSTs in NF Type 1

Posted By NF Midwest | On March 17th, 2020

NF Midwest has had a very important article written about Malignant Peripheral Nerve Sheath Tumors (or MPNSTs) in Neurofibromatosis Type…

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Gastrointestinal Tumors in NF Type 1

Posted By Paul J LeBlanc, RN, BS, CCM | On March 11th, 2020

Dr. James Tonsgard, MD, of the University of Chicago, graciously contributed this article. The article is an overview of Gastrointestinal…

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TeeUp4NF TopGolf

Posted By NF Midwest | On March 3rd, 2020

We could have not had a more perfect day for our TeeUp4NF event at TopGolf Naperville! We had 150 attendees,…

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Adolescents Resiliency with NF Study

Posted By Paul J LeBlanc, RN, BS, CCM | On February 27th, 2020

The Family Center for Neurofibromatosis and the Integrated Brain Health Clinical and Research Program (IBHCRP) at the Massachusetts General Hospital…

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