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NPKUA Conference 2012

The 2012 National PKU Alliance Conference was the largest known gathering of the PKU community. With the goal to improve the lives of individuals with PKU and pursue a cure, this conference drew noted experts from around the nation and the world.

Patient Power’s PKU new host, Kevin Alexander was there to bring you several interviews covering important news from the conference, including:

  • PKU Research Breakthroughs
  • Successful PKU Management
  • PKU and Executive Function
  • Interviews with Powerful Patients
  • PKU Insurance Reimbursement
  • And More!

Interviews from the conference will be posted to this page as they become available. Make sure you are signed up for email alerts to get all the latest.

Featured Program

September 7, 2012

Research Update: PKU and the Brain

(More Info)

Nutrition

Featuring:

Kevin Alexander Shawn Christ, Ph.D.

Expert Interviews

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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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.

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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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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.

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Patient and Caregiver Stories

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.

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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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