The Legacy of Angels Foundation is a private family 501 (c) (3) organization co-founded by Paul and Sue Rosenau in 2008. The foundation was created in an effort to fund curative research for two genetic disorders; Krabbe and Cystic Fibrosis. These two genetic disorders have impacted the lives of Paul, Sue, and their immediate family. Krabbe disease is a type of leukodystrophy that affects myelin production, the material that surrounds and protects nerve fibers. An individual’s genetic makeup lacks an important enzyme that assists in the production of myelin. Without myelin, brain cells die and nerves in other body areas do not work properly and ultimately causing death. Cystic Fibrosis is a serious genetic disorder that damages the lungs and pancreas over a period of time. This disorder creates long term health issues and repeated infections in the lungs that will shorten an individual’s life span. Each day, the board of TLOAF works to provide education, fund research, and participate in advocacy initiatives at local and national levels for both genetic disorders. The short term answer is newborn screening which is currently being done with Cystic Fibrosis but Krabbe disease needs to be added to the panel nationwide. Newborn screening provides optimal health and wellbeing or insurance for living life without detectable genetic diseases. The long term goal is a cure for both Cystic Fibrosis and Krabbe disease in this lifetime.
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