Karla Margeson, Multiple Sclerosis
Karla Margeson, Multiple Sclerosis
What it means to be a Powerful Patient.

0:51

Excelling with ADHD!
Excelling with ADHD!
Blake Taylor's story.

4:13

Living with PKU
Living with PKU
Gregg was diagnosed with PKU at birth, but is living well as an adult. Find out more...

3:43

Teen with PKU Headed to College: Nothing Can Stop Her Now
Teen with PKU Headed to College: Nothing Can Stop Her Now
Find out how Breanna has coped with PKU since birth.

4:49

Challenges of PKU for Young Children: Liam Bobker’s Story
Challenges of PKU for Young Children: Liam Bobker’s Story
Learn how Liam and his family are coping with PKU...

4:29

Clinical Metabolic Dietitian with PKU Maximizes her Potential to Achieve
Clinical Metabolic Dietitian with PKU Maximizes her Potential to Achieve
Mary is a registered dietitian with PKU. Hear her story...

3:12

Graduate Student with PKU Fulfills Her Dreams
Graduate Student with PKU Fulfills Her Dreams
Kate was diagnosed with PKU at birth. Hear about her challenges and successes with PKU...

5:28

Meet Molly, the 9-year-old NY Dynamo
Meet Molly, the 9-year-old NY Dynamo
Watch Molly's story and be inspired!

4:03

Mindful Eating and Exercising with Diabetes
Mindful Eating and Exercising with Diabetes
Listen to how Rick Roberts is living well with diabetes...

3:47

Devoted Clinical Dietitian with PKU Helps Others Cope with Diet
Devoted Clinical Dietitian with PKU Helps Others Cope with Diet
Hunter Rametta made it her mission to help others maintain a successful diet with PKU...

5:25

How a Daily Walk Improved the Life of a Diabetic
How a Daily Walk Improved the Life of a Diabetic
Hear how Rosie Schaffer improved her diabetes with just a few small steps...

5:30

How New Guidelines will Help Interstitial Cystitis Patients
How New Guidelines will Help Interstitial Cystitis Patients
Dr. Philip Hanno discusses new AUA guidelines for diagnosing and treating interstitial cystitis.

7:03

Plenty of Hope for People with Urinary Incontinence
Plenty of Hope for People with Urinary Incontinence
Dr. Ariana Smith talks about advances in treatment for incontinence.

5:44

A Thriving Young Adult with PKU Shares Her Tips for Success
A Thriving Young Adult with PKU Shares Her Tips for Success

3:34

Adult with PKU Thriving: My Parents Deserve the Credit
Adult with PKU Thriving: My Parents Deserve the Credit
Hear how Thomas Quisenberry, a minister in Chattanooga, Tennessee, is thriving and living well with Phenylketonuria (PKU).

6:23

Tips for Adding Variety to the PKU Diet
Tips for Adding Variety to the PKU Diet
Learn what others like Brenda Winiarski are doing to perfect strategies for making delicious food for the PKU community...

2:57

Ask Dr. deCastro: Your PNH Questions Answered
Ask Dr. deCastro: Your PNH Questions Answered
Dr. deCastro answers PNH questions submitted by patients...

3:33

Research Update: PKU and the Brain
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

The Emotional Toll from PKU
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

Dec. 3: Take Action on National PKU Awareness Day!
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

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

5:33

Research Effort to Block Amino Acid Impact on PKU Brain Function
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.

Taking Responsibility for PKU Management
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

50 Year Celebration of Newborn Screening Affirms Life-Saving Efforts
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

Preventing Alzheimer’s Before Disease Onset: A Key Expert Weighs In
Preventing Alzheimer’s Before Disease Onset: A Key Expert Weighs In
Imagine being able to prevent a disease longs before it starts, don't miss this fascinating discussion...

10:54

Raising Children with PKU
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

PKU Research Advances
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

2012 NPKUA Conference Update: PKU and Insurance
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

First Australian Diagnosed with PKU Shares Her Story
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

PKU Convention Update: Newborn Screening on the Rise
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

Understanding the Difference Between PKU and ADHD
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

Explaining All of the Options for AVM: Cerebral Arteriovenous Malformation
Explaining All of the Options for AVM: Cerebral Arteriovenous Malformation
When is a headache something more serious? Dr. Bernard Bendok discusses the symptoms of an AVM and the latest treatment options.

12:00

Take Action on World Rare Disease Day
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

New Care Guidelines a Key Focus at the 2012 European PKU Conference
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

Kids Learn Life-Long Skills at PKU Camp
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.

5:56