Welcome !!!Christine S. BrownExecutive Director

• 529 adults, families, and professionals in the PKU community

• 8 countries

• 32 states

The NPKUA works to improve the lives of individuals and families with PKU and pursue a cure.

NPKUA Member Organizations

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

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

PKU Research Strategy   Our research goal is to improve treatment

options for PKU and accelerate a cure. By consolidating research dollars, our funds have more impact.

PKU Research Grants

Dr. Mike Gibson

Dr. Denise Ney

Dr. Cary Harding

Dr. Harvey Levy

Katherine Deming

PKU Fellowships

Dr. Kristen Skvorak and Dr. Roberto Gramignoli

Educational Materials

www.npkua.org

Educational Materials• My PKU Binder – a comprehensive manual on effectively managing PKU on a daily basis

• tips across the lifespan• emergency preparedness• traveling• dining out• tracking your progress• letters, handouts, etc.

Educational Materials

• PKU and the Brain – based on the 2010 MGM Supplement: Phenylketonuria, Psychology and the Brain

• executive function• behavior• academic performance• ADHD• brain scan research

PKU Adult Program

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.

PKU Adults: Returning to Diet Booklet

• 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

PKU Adults: Maternal PKU

• Emergency assistance program that is accessed by clinic

• Maternal PKU mentoring program

Making our Voice Heard on Medical Foods

Disconnect!

PKU T Only Tx Select Disorders

16

Tx All Disorders

16612

Mandate Distribution State by State

No Mandate PKU Only Select Disorders All Disorders

Medical Foods Equity Act

PKU has a Seat at the National Table!

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