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 | Navigating Living Losses: Understanding, Acknowledging, and Managing Change
Join Lori Krause for a workshop designed to explore and process “living losses”—non-death-related losses that arise from life transitions, changes, or unmet expectations. Examples of living losses include the loss of identity, health, relationships, careers, or abilities. Participants will gain tools to acknowledge these losses, better understand their emotional impact, and develop strategies to navigate the associated changes.
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 | Navigating Living Losses: Understanding, Acknowledging, and Managing Change
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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.