Each year NF Midwest provides the opportunity for families to apply for scholarships for their son or daughter to attend a summer camp experience specifically for youth affected by NF. We want to highlight one youth’s experience this year at Camp Brainy Ridge Camp NF located in St. George, Virginia. We asked Ben and his…
Read More2024 Scholarship Recipients
The NF Midwest Scholarship Program is proud to add another year of empowering students with neurofibromatosis (NF) to achieve their educational dreams. We continue to honor the generous gift from Frances and Irma Napolilli, which allows us to award scholarships of up to $1,500 to deserving individuals. These recipients are models of hard work and…
Read MoreThank You! You Are On Fire!
We are absolutely thrilled to share some amazing news: thanks to your incredible generosity, you’ve raised an outstanding $144,024 for NF Midwest! These funds make a real difference in the lives of children, adults, and families impacted by neurofibromatosis. Your support fuels the fire of our mission of working with Clinics, raising Awareness, advancing Research,…
Read MoreFebruary 29th is Rare Disease Day
February 29th is Rare Disease Day. In the United States alone, according to the National Organization for Rare Diseases (NORD), at least 25-30 million individuals fight invisible battles against rare diseases. That’s right, millions. But what defines “rare”? By NORD’s definition, it affects less than 200,000 people in the US, although different countries may have…
Read MoreThank You to Our DC Advocates
Thank You to Our “Boots on the Hill” We extend our heartfelt gratitude to Laura Haslam, Christina, Kassandra Thomas, Adam, Max Rosenberg, Don, Karissa, and Diana Haberkamp. Your recent visit to Washington, D.C., from February 4th to 6th, where you engaged with representatives and senators from Illinois and Missouri, exemplifies the collective strength of NF…
Read MoreNovember 15th is National Philanthropy Day: Celebrating Acts of Giving and Impact at NF Midwest
National Philanthropy Day is a cherished occasion that shines a spotlight on individuals who dedicate their resources, time, and unique talents to drive change in the causes and communities that hold a special place in their hearts. At NF Midwest, we’re incredibly fortunate and deeply appreciative of the unwavering support from our community members. Thanks…
Read MoreAugust 30th is National Grief Awareness Day
August 30th is National Grief Awareness Day. National Grief Awareness Day was founded by Angie Cartwright in 2014 to normalize grief and educate people on the process. Psychiatrist and researcher Elizabeth Kübler-Ross states that there are five stages of grief: denial, anger, bargaining, depression, and acceptance. Over time shock, disbelief, and reconstruction have been added to the list of…
Read MoreDo You Know the Price of Your Hospital’s Items and Services?
The Hospital Price Transparency is a regulation introduced by the Centers for Medicare and Medicaid Services (CMS) and took effect on January 1, 2021. This rule was implemented to force hospitals to be more transparent about the prices of services provided. Before this rule, finding a clear answer to what services may cost could be…
Read More2023 Scholarship Recipients
For many years NF Midwest has provided the opportunity for students from our area diagnosed with NF1, NF2-SWN, or schwannomatosis and pursuing post-high school education the opportunity to earn the NF Midwest Scholarship of $1000. This fantastic opportunity is funded by a charitable trust left to NF Midwest by Frances and Irma Napolilli. Applicants who…
Read MoreThe Power of Passion: Volunteer Spotlight
Christina and Kristi from Walk4NF Columbia accomplished some amazing things recently. Christina and Kristi have been the committee chairs of Walk4NF Columbia since 2019. These two lovely people are the queens of hustle. Literally everywhere they go, they share their passion and information about NF. In doing that, they have been able to score some…
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