Have you seen our new video series called Meet the Faces of NF Care? This series is designed to give you, the NF community, a chance to learn more about NF care and the dedicated providers in your area (Illinois, Indiana, Iowa, Kentucky, Wisconsin, and Missouri). Through these informative recordings, you’ll gain valuable insights, including:…
Read MoreThe Loss of an NF Legend: Dr. Vincent Riccardi
We are deeply saddened by the passing of Dr. Vincent “Vic” Riccardi, a pioneering expert in neurofibromatosis (NF) research and a founder of the Texas Neurofibromatosis Foundation. Our heartfelt condolences go out to his family, friends, and colleagues. Dr. Riccardi’s contributions over a career of more than 40 years were groundbreaking. He wrote many important…
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 MoreNF1 Optic Pathway Gliomas Study
Identify biomarkers for visual restoration strategies in Neurofibromatosis Type 1 optic pathway glioma patients. Stanford Ophthalmology, Children’s Hospital of Philadelphia and Gilbert Family Foundation | 2024 This study is seeking to learn how different eye tests and devices can help understand vision in patients with NF1, including how vision loss might show up on different…
Read MoreGreat News! $25 Million Secured for Neurofibromatosis Research in FY 2024
There’s fantastic news for the fight against neurofibromatosis (NF) and schwannomatosis (SWN)! The recent spending bill allocates $25 million specifically for the Neurofibromatosis Research Program (NFRP) in Fiscal Year (FY) 2024. This vital funding is a testament to the tireless efforts of NF Midwest and other advocacy organizations, and volunteers. The NFRP funding complements 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 MoreLegends of the Cause: Gordon and Gert
Legends of the NF Cause: How Do We Honor Gordon Cummings and Gert Ginsberg? Losing Gordon and Gert In the past few months, NF Midwest bid a sad farewell to two remarkable people who dedicated their lives to the neurofibromatosis cause: Gordon Cummings, who passed away at 93 on February 9th, and Gert Ginsberg, who…
Read MoreCoffee-Colored Spots: Café au Lait and Understanding NF
Have you ever noticed faint, light brown patches on your skin? These “café au lait” spots are quite common, but having more than six can spark concerns about neurofibromatosis (NF). While the link exists, let’s take a deep breath and unpack what this really means. Andre Panossian, MD explains that NF type 1 and café au…
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…
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