The softest level of sound a person can detect.
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Apr 1st, 2024
The 2025 Scientific Symposium will be held in Minneapolis, Minnesota from September 25-27. We hope to see you there! Visit the Symposium website here to register! What is the Symposium? The Scientific Symposium serves as a vital platform for the...

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 8th, 2025
If you asked me for a defining memory of our journey, it might surprise you. Some of my most cherished moments were the long hospital stays — the time I got to spend one-on-one with Hunsley, free from the distractions of the world.