Neurofibromatosis Midwest is proud to announce our eleven scholarship recipients for the 2017-2018 academic year. Now in it’s third year, our scholarship program was launched with funds from a charitable trust left to NF Midwest by Frances and Irma Napolilli. The program awards $1,000 scholarships to students from our service area who are diagnosed with…
Read MoreA Special Letter From An NF Mom
From Jenn, mom of Audrey, a 5-year-old with NF1 I think your daughter might have a condition called neurofibromatosis. Don’t Google it. Look at me….. DON’T Google it. We’re All In this Together: Make a Donation Now Do you remember the first time you heard the word “neurofibromatosis”? Did you ignore your doctor’s advice and…
Read MoreDedicated Family
Erin and Jonathan are big on raising awareness for neurofibromatosis and being advocates for NF Midwest. The two have a young son, Cash, with NF. In a video below they discuss more about their son, NF Midwest, and neurofibromatosis. Many may relate to how Erin and Jonathan feel about Cash’s diagnosis and possible future. The family is truly…
Read MoreBuilding Resilience in Midlife
Living with a chronic illness can be extremely difficult. NF is no exception. The article linked in this blog post discusses “ways to bounce back from adversity” and how to cope with stressful situations. Resilience is the big topic of the article but is broken down into various coping strategies. Some of these strategies include…
Read MoreCafe Au Lait Spots and Diagnosis of NF1
The following is a blog by Dr. Luiz Rodrigues. Originally posted in Portuguese on May 7, 2017. Additions and translation were provided by Dr. Mata-Machado from the NF Clinic at University of Illinois. When a child has two or more criteria for the diagnosis of neurofibromatosis type 1 (NF1), we are almost certain that she has…
Read MoreHappy Haddie Says #TheWordIs
Join “Happy Haddie” and the “CrazyTwins” in the campaign to spread the word! What’s the word? #TheWordIs neuro-fibroma-tosis! Take your video of people saying the word (or mangling the word) neurofibromatosis and share it using the hashtage #TheWordIs. Be sure to share a link such as this one at www.nfmidwest.org so that people can learn…
Read MoreNews: PhD Thesis Shows Lower Resistance to Insulin in Neurofibromatosis Type 1
The following is a blog post by Dr. Luiz Rodrigues. Originally posted in Portuguese on March 1, 2017. Additions and translation were provided by Dr. Mata-Machado from the NF Clinic at Amita Health/St. Alexius. Nutritionist Aline Stangherlin Martins publicly presented the findings of her research showing that insulin resistance is lower in people with Type…
Read MoreSpring 2017 Neurofibromatosis Midwest Newsletter
Check out our Spring 2017 NF Midwest Newsletter! The highlights of this issue include… Plus much more! SPRING 2017 NEWSLETTER
Read MoreMeet Our 2016 Scholarship Recipients!
Neurofibromatosis Midwest is proud to announce our seventeen scholarship recipients for the 2016-2017 academic year. Now in its second year, our scholarship program was launched with funds from a charitable trust left to NF Midwest by Frances and Irma Napolilli. The program awards $1,000 scholarships to students from our service area who are diagnosed with…
Read MoreMadison Area Teen Gets Great Press for Neurofibromatosis
Marissa and her mom from Madison’s Great Steps team, Marissa’s Mighty Mob, did a fantastic interview on “Talk of the Town,” a segment on 57 News in Madison, Wisconsin. The two woman, along with their extended friends and family, are dedicated to raising funds and awareness for neurofibromatosis and NF Midwest. Last year their team…
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