People who themselves have been diagnosed with NF1, NF2 and Schwannomatosis, or who have a child with one of these diagnoses, often wonder whether future children of theirs will be affected with the same condition. There can be deeply-held beliefs and sensitivities that are accessed in the process of first talking about a genetic risk…
Read MoreNF1 and Velopharyngeal Insufficiency
Velopharyngeal insufficiency (VPI) is a resonance disorder that occurs during speech that results from the inability of the vellum (or soft palate) to meet with the nasopharynx (or the back of the throat). When a person has VPI, there is an incomplete closure between the velum and nasopharynx, forcing sound into the nasal cavity. VPI…
Read MoreSponsorship Shoutout: Hartigan’s Heroes and Romeoville Toyota
Annie, the captain of Hartigan’s Heroes, heard about Toyota Cares from a neighbor. She reached out to her local Toyota dealership and the rest was history! For 3 years now, Romeoville Toyota has sponsored Hartigan’s Heroes and NF Midwest’s Great Steps Walk 4 NF walks. Getting a sponsorship can seem intimidating but by simply asking…
Read MoreFundraiser Feature : Jessica and Ellies Crew
Let’s say hello to Jessica and her family! Her team, Ellie’s Crew, has been hard at work this year! Jessica came up with an inventive and FUN way to raise funds for her team and NF Midwest. Jessica aquired 12 raffle baskets and utlitizing social media sold raffle tickets for each one. By setting a…
Read MoreWhile the Kids are Home Learning You Should Too
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…
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