Swelling of the larynx.
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Aug 19th, 2025
I am a poet, a writer, and a storyteller. I’m also a student, and an older brother to a young man with FA and special needs. I’m a DACA recipient. I’m here. I’m present. I am more than my current mental state, and more than this diagnosis.

Aug 18th, 2025
People with rare diseases like FA often rely on a combination of healthcare programs and insurance coverage. Any change that reduces access to care or increases out-of-pocket costs can have real-world consequences for our community.

May 6th, 2025
It is with full hearts and deep sadness that we remember our dear friend, long-time supporter, and former board member, Sharon Schuman, who passed away on April 23, 2025, following a tragic accident near her home in Eugene, Oregon. Her...