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…
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 MoreUnleash Your Impact: DIY Fundraising Spotlight
NF Midwest extends heartfelt gratitude to the Frano Family for their remarkable generosity and creativity. Inspired by their commitment, the Frano’s daughters crafted beautiful bracelets, turning their creative energy into a force for good. Additionally, Kim Frano was a part of the Pink Balls who participated in the Lake Bluff engaged in a wiffleball tournament,…
Read MoreEmpower Your Health: Health Literacy Awareness Month
October is a busy month when it comes to health awareness campaigns, and among them is Health Literacy Awareness. This observance is dedicated to the importance of acquiring and comprehending health-related information and using that knowledge to make informed decisions about one’s well-being. I’ve frequently been in situations where I’ve left a medical appointment with…
Read MoreBreast Cancer Awareness Month: Know the NF Risk
October is breast cancer awareness month. Studies have shown that breast cancer can affect 1 in 8 women. For women with an average risk of breast cancer, the recommendation is to start breast cancer screenings at age 40. For those at a higher risk, such as women with neurofibromatosis type (NF1), the current recommendation is to start screenings by age…
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