Category: General

Back-to-school season brings new routines, new teachers, and sometimes new challenges for families living with neurofibromatosis (NF). That’s why we’re sharing a valuable resource created by our partners at the Children’s Tumor Foundation. The NF Parent Guidebook: How to Help Children with Learning Challenges Associated with Neurofibromatosis Type 1 is a free, 160-page guide designed…

This May, NF Midwest, and other NF organizations are coming together to turn awareness into action. We’re turning up the volume on NF Awareness Month. This year, many of us are calling it NF Action Month. Why? Because awareness opens eyes, action changes lives! All month long, we’re asking the community to share NFACTS (a play on NF facts and NF acts) to…

Check out NF Midwest’s December update. If you are connected with us, you should have received this in an email! If not, use one of our contact forms to connect with us. The highlights of this update are various new and existing research studies looking for participants. These can range from simple surveys to a long study…

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…

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…

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…

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…