When Ryan was diagnosed with Fanconi anemia (FA) at 18 months old, it was devastating. There were so many unknowns, and trying to gather information online was both frustrating and scary. When we found the Fanconi Cancer Foundation (FCF) and...
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Aileen Carlos
Board Member | JD
Aileen is a lawyer based in Portland, Ore. She was introduced to Fanconi anemia while attending law school with Jon Frohnmayer and taking classes from Dave Frohnmayer. She has worked in the legal nonprofit and education sector, and continues to support nonprofits with her legal and dispute resolution experience. Aileen grew up in Pittsburgh, Penn., and continues to be an avid Pittsburgh sports fan despite her distance. She and her partner recently bought their first home, with a fenced in yard that their dog adores. Aileen enjoys hiking and photography, and volunteers for several nonprofits in her free time.
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For our family, living with FA means living with faith. We see Liam as a normal, healthy child who continues to grow and surprise us. At the same time, we know there are real challenges.
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.