Research is the answer to one day making FA a treatable, manageable disease. Here, you'll discover the most recent strides in FA research and activities funded by FCF. Every quarter, we'll bring you updates on newly funded grants, ongoing projects, and significant milestones.
Events
FA Connect | Rewriting the Holidays After Loss: Finding Strength and Comfort While Grieving
We recognize the holiday season can be difficult amidst grief, whether caused by the loss of a loved one, anticipatory grief, or living losses. Join Lori Krause for this workshop where participants will acknowledge and validate their emotions, then discuss practical tools to cope with grief during the holidays.
5:00 – 6:30 pm Pacific Time
Spanish interpretation services are available upon request when registering for the session. Please note that while we will do our best to provide interpretation, we cannot guarantee their availability.
FA Connect | Rewriting the Holidays After Loss: Finding Strength and Comfort While Grieving
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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.

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.