Transcript Slide 1

Welcome !!!
Christine S. Brown
Executive Director
529 adults, families, and professionals in the
PKU community
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• 8 countries
• 32 states
The NPKUA works to
improve the lives of
individuals and families
with PKU and pursue a
cure.
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California PKU Coalition
Children’s PKU Network
Florida PKU Foundation
Georgia PKU Connect
Indiana PKU and Allied
Disorders Association
Intermountain PKU and
Allied Disorders Association
Iowa PKU Foundation
Maryland Alliance of PKU
Families
Michaux Family Foundation
for PKU
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Michigan PKU and Allied
Disorders
Mid-Atlantic Connection for
PKU and Allied Disorders
Minnesota PKU Foundation
New England Connection for
PKU and Allied Disorders
North Texas PKU Association
PKU Organization of Illinois
PKU Pursuits
Tennessee PKU Foundation
WyoMed Campaign
Organization
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Our research goal is to improve treatment
options for PKU and accelerate a cure. By
consolidating research dollars, our funds have
more impact.
Dr. Harvey Levy
Dr. Mike Gibson
Dr. Cary Harding
Dr. Denise Ney
Katherine Deming
Dr. Kristen Skvorak and Dr. Roberto Gramignoli
www.npkua.org
• My PKU Binder – a
comprehensive manual on
effectively managing PKU
on a daily basis
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tips across the lifespan
emergency preparedness
traveling
dining out
tracking your progress
letters, handouts, etc.
• PKU and the Brain –
based on the 2010 MGM
Supplement: Phenylketonuria,
Psychology and the Brain
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executive function
behavior
academic performance
ADHD
brain scan research
The PKU Adult Program is a new initiative that provides information and support for
adults living with PKU. Adults with PKU face many challenges. The program provides
a one-stop resource for adults seeking to improve their quality of life. This is the
only program composed of a national network of adults with PKU, their families,
clinicians, and industry leaders to address the variety of needs of adults with PKU.
• 12 page booklet
• Easy to read
• Written by PKU adults for
PKU adults
• Symptoms of not being on
diet
• 3 steps to better
management: clinic, making
friends with your formula, and
what to eat
• How to count phe
• Words of encouragement
• Emergency
assistance
program that is
accessed by clinic
• Maternal PKU
mentoring program
Mandate Distribution State by State
12
No Mandate
6
PKUTOnly
PKU
Only
16
Select
Disorders
Tx
Select
Disorders
16
All Disorders
Tx
All Disorders
PKU has a Seat at the National Table!
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Dept of Health and Human Services
Centers for Medicaid and Medicare
Services (CMS)
Federal Employee Heath Benefit Plans
and Tricare
The White House
Congress
State Legislatures
Federal Employee Heath Benefit Plans
and Tricare
National Institute of Health
Agency for Health Care Quality
National Institute of Health
Secretary’s Advisory Council on
Heritable Disorders in Newborns and
Children
THANK YOU!
Board of Directors
 Member Organizations
 Staff
 Members and Volunteers
 Donors
 Metabolic Clinics
 Geneticists, Registered
Dieticians and Genetic
Counselors
 Industry Partners
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