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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Alexander LaVake
Research Program Manager | MPH
Alexander was drawn to the public health field as a way to promote health and wellbeing within a framework of equity and social justice. He earned his Bachelor’s degree in Communications from Temple University and his Master’s in Public Health from Portland State University. He most recently implemented grant-funded food access and health education programs for at-risk and homeless youth. In his role as Research Program Manager, he works to advance FARF’s research priorities, including managing the grant award process and assisting with scientific initiatives. Alexander is thrilled to join the passionate FARF team and bring to this new role his drive to advance the organization’s mission.
Last year he relocated to peaceful Eugene after a decade in Portland. Alexander is an enthusiastic photographer. He also enjoys reading, travel, and cooking. He spends his free time loving on Oregon’s abundance of farms, forests, and food.
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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.