Please note: While our archived programs have great information, they are in an area we are no longer actively maintaining. Since medical progress marches ahead, please see your own doctor and other resources for the latest medical information that’s right for you.

Archived Programs

Powerful PKU Mom Shares Difficult Diagnosis Story

When Michelle Hays' daughter was nearly one year old, she received surprising news: Katy had PKU. She shares her story about how the standard newborn screening test had been overlooked and the diagnosis forever changed their lives.

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The Funding Environment for PKU Research Today

Dr. Michael Gibson, chair of The Clinical Pharmacology Unit at Washington State University, explains the current research funding environment for rare diseases.

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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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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.

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Working Globally: Raising Awareness about Newborn Screening and PKU in Brazil

Kevin Alexander, PKU advocate and contributor to Patient Power, shares an update on his recent trip to Curitiba, Brazil to speak at a newborn screening symposium sponsored and share his film, ‘My PKU Life’, with Portuguese subtitles.

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Biggest Healthcare Challenges for PKU Patients

Adam Johnson, President of The Metabolic Disease Foundation, discusses how inconsistent healthcare coverage for PKU foods and treatments affects patients in the United States.

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Kids Learn Life-Long Skills at PKU Camp

PKU reporter Kevin Alexander talks with Debbie Colyer, the first Australian diagnosed with PKU, about a novel PKU summer camp for kids.

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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.

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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!

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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.

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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.

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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.

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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.

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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 PKU and 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.

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PKU Effects on Cognitive Function

At the recent 2012 National PKU Alliance Conference, Kevin Alexander interviews Dr. Desiree White about the impact PKU has on how the brain organizes information. As a clinical neuro-psychologist with PKU expertise, she shares key steps to use for support.

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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 a report from the 2012 NPKUA Conference. Learn how this board is working to help fund and expand PKU research today.

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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.

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First Patient Diagnosed with PKU in Australia Shares Her Story

Debbie Colyer was the the first patient in Australia who was 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.

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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.

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PKU Convention Update: Newborn Screening on the Rise

Kevin Alexander, PKU patient and advocate, shares a video report from the Perkin Elmer Annual Symposium on Newborn Screening in Finland. Kevin Alexander is the keynote speaker at this international symposium.

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Comentario de español: Logre una Mejor Salud con la Dieta PKU: ¿Qué Hay de Nuevo?

Comentario de español: Logre una Mejor Salud con la Dieta PKU: ¿Qué Hay de Nuevo?

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Comentario de español: PKU y el EMBARAZO: Disminuya los Riesgos y Tenga un Bebé Sano

Comentario de español: PKU y el EMBARAZO: Disminuya los Riesgos y Tenga un Bebé Sano

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Featured Blog
From Caregiver to Patient Advocate: My Journey

By Sheryl McIntire


Page last updated on October 17, 2011