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Living with PKU
Gregg was diagnosed with PKU at birth, but is living well as an adult. Find out more... 3:43
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Research Update: PKU and the Brain
Dr. Shawn Christ, a research neuropsychologist from the University of Missouri, details his research findings focused on the impact PKU has on brain function. He explores the 'connectivity' across different parts of the brain when low phenylalanine levels are present. Dr. Christ shared this research as a recent guest speaker at the National PKU Alliance Conference. 4:15
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The Emotional Toll from PKU
Adam Johnson, President of the Metabolic Disease Foundation, details the emotional toll PKU can exact on people living with the disease. He shares important tips on how to cope. 3:49
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Dec. 3: Take Action on National PKU Awareness Day!
December 3, 2012 is National PKU Awareness Day. There are a number of ways you can raise awareness about Phenylketonuria (PKU) in your community. Take a moment to review this Patient Power video and get involved! 2
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Research Effort to Block Amino Acid Impact on PKU Brain Function
Dr. Michael Gibson, Professor and Chair of The Clinical Pharmacology Unit at Washington State University, explains his novel research effort trying to understand ways to block the transport of the amino acid, Phenylalanine, that has a negative impact on Phenylketonuria (PKU) brain function.
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Taking Responsibility for PKU Management
Adam Johnson, President of the Metabolic Disease Foundation, shares how taking responsibility for PKU Management can be an empowering step toward better health for patients. 3:23
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50 Year Celebration of Newborn Screening Affirms Life-Saving Efforts
To celebrate 50 years of newborn screening, The Association of Public Health Laboratories (APHL) is kicking off a big public awareness campaign. Scott Becker, APHL's Executive Director, shares details about this effort to save lives and recognize the importance newborn screening plays in supporting public health. 11:00
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Raising Children with PKU
Kevin Alexander interviews parent Jason Raitz about raising two children with PKU. Jason relates their family's experience from the discovery of PKU through a screening test to management and support. 7:21
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PKU Research Advances
Dr. Thomas Franklin, Chair of The National PKU Alliance (NPKUA) Scientific Advisory Board, details the latest PKU research underway designed to improve treatment and potentially find a cure. He shares reports from the 2012 NPKUA Conference. Learn how this board is working to help fund and expand PKU research today. 5:39
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2012 NPKUA Conference Update: PKU and Insurance
At the 2012 National PKU Alliance Conference, Kevin Alexander interviews insurance expert Sean Corry, President of Sprague Israel Giles, Inc. on PKU and insurance. Learn more about the important ways the PKU community can partner with insurance carriers regarding coverage. 3:44
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First Australian Diagnosed with PKU Shares Her Story
Debbie Colyer is the first patient in Australia formally screened, diagnosed and treated for PKU. Kevin Alexander interviews Debbie at the 2012 NPKUA Conference about her experience, her recognition by the Queen of England and her hope for other PKU patients. 6:34
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PKU Convention Update: Newborn Screening on the Rise
Kevin Alexander, PKU patient and advocate, shares a video report from the 2012 PerkinElmer Annual Symposium on Newborn Screening in Finland. Kevin Alexander was the keynote speaker at this international symposium. 5:11
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Understanding the Difference Between PKU and ADHD
Dr. Kevin Antshel discusses the subtle but important differences between Attention Deficit Hyperactivity Disorder (ADHD) and Phenylketonuria (PKU). Proper diagnosis is key for patients because there is an overlap in some of the symptoms. 3:54
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Take Action on World Rare Disease Day
Kevin Alexander, PKU reporter for Patient Power, encourages everyone to step up and support World Rare Disease Day. He shares some of the important resources available so that you can get involved today. 2:31
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New Care Guidelines a Key Focus at the 2012 European PKU Conference
Paul van Berkel, representative of the Dutch PKU Association Nederlandse Phenylketonurie Vereniging (NPKUV), shares a 2012 European PKU Conference update. He details conference topics and current efforts to form guidelines that may serve as a European gold standard of care for PKU. Experts from across Europe meet annually at this PKU conference to collaborate and advance solutions for patients and the medical community. 11:56
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