Russell Brown, Chief Executive Officer, Ruach Renewable Energy
Welcome !!! Christine S. Brown Executive Director.
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Transcript of Welcome !!! Christine S. Brown Executive Director.
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