Advocacy efforts play an essential role in building stronger systems of care for rare diseases. By elevating the experiences of families and engaging policymakers, organizations such as the Ivan & Joan Foundation are helping move rare disease awareness and care forward in their communities.
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Brian Horrigan
Board Member | MA/ABD
Father of Delia
Brian Horrigan is Exhibits Curator at the Minnesota Historical Society, where he is responsible for major exhibits at the Minnesota History Center and historic sites around the state. His daughter, Delia Levine-Horrigan, was born in 1987 and diagnosed with FA at age 11. Since Delia’s diagnosis, Brian and his family has been actively involved in the FA family community. Since 2000, his family has fundraised for the Fund consistently and inspired other families to do the same.
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My name is Kambri, and I’m 17 years old. I was diagnosed with Fanconi anemia when I was five. Before my diagnosis, I just didn’t feel good for a while. I had frequent nosebleeds, bruised easily, and was tired a...
What I hope for most is a cure. And until then, I hope for Paige and others with FA to live lives as close to normal as possible, filled with opportunity, independence, and happiness.