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 eye imaging devices that measure the nerves or the blood vessels of the eye. The study aims to understand the mechanisms of vision loss caused by neurofibromatosis type 1 (NF1)-associated optic pathway gliomas, or NF1-OPGs. Subjects eight years and older with NF1 are eligible to enroll.
Rachel was 13 when she first attended Camp NF. At an age when so much was changing, camp gave her something she deeply needed: the chance to meet other young people who understood life with NF. “NF camp gave me the opportunity to connect with others who had a shared experience and come to understand... Read More
McKenna Smith had been thinking about doing something for the NF community. She wanted more people to understand NF, and she wanted to raise funds to help individuals and families find care, resources, support, and connection. Then she saw NF Midwest’s Walk Your Way campaign and sent us a message. From there, McKenna got to... Read More
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