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...
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Jakub Tolar
Dept. of Pediatric Hematology-Oncology | MD, PhD | Minneapolis, MN
Dr. Tolar’s research focuses on finding new ways of treating children with lethal diseases – cancer, inborn errors of metabolism, and devastating genetic disorders – using stem cell transplantation. He is also looking for safer and more effective methods of repairing and using a patient’s own cells in diseases such as epidermolysis bullosa, mucopolysaccharidosis type I (Hurler syndrome), Fanconi anemia, and dyskeratosis congenita.
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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.
Fear and sadness are embedded with Fanconi anemia (FA), yet I have always tried to have a hopeful tone to my essays thinking of the effect on the families who read it. This one is no different. I lost my gutsy 24-year-old daughter Tara in September. She was created by God for purpose. I always told her she brought out the best in people.