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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Abigail Havens
Development Coordinator
Though originally from Oregon, Abigail traveled all over the country after completing her bachelor’s degree in Interdisciplinary Studies. She lived in South Korea, where she taught English as a second language. This sparked an interest in linguistics, leading her to get a master’s degree in the subject from the University of Oregon. Abigail manages donor relations at the Fund, including the upkeep of the donor database and the issuing of tax receipts.
“Our donors make the mission of the Fund possible. We’re so grateful for their contributions, which really do make a difference. I’m happy to play a role in the work the Fund accomplishes.”
Around the office, Abi is known for her impeccable sense of style and quiet, biting wit. She’s also an avid reader and salsa dancing aficionado.
What are three things you have no patience for?
Circular logic, pettiness, and hard-to-peel oranges.
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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.