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Welcome !!! Christine S. Brown Executive Director

NPKUA is dedicated to improving the lives of individuals and families with PKU through research, education, and support. We work with member organizations in 8 countries and 32 states to pursue a cure. Join us today!

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Welcome !!! Christine S. Brown Executive Director

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  1. Welcome !!! Christine S. Brown Executive Director

  2. 529 adults, families, and professionals in the PKU community • 8 countries • 32 states

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

  4. NPKUA Member Organizations • 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 • 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

  5. 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.

  6. PKU Research Grants Dr. Harvey Levy Dr. Mike Gibson Dr. Cary Harding Katherine Deming Dr. Denise Ney

  7. PKU Fellowships Dr. Kristen Skvorak and Dr. Roberto Gramignoli

  8. Educational Materials www.npkua.org

  9. 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.

  10. 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

  11. 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.

  12. 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

  13. PKU Adults: Maternal PKU • Emergency assistance program that is accessed by clinic • Maternal PKU mentoring program

  14. Making our Voice Heard on Medical Foods

  15. Disconnect!

  16. Mandate Distribution State by State 12 6 16 16 No Mandate PKU Only Select Disorders All Disorders PKU T Only Tx Select Disorders Tx All Disorders

  17. Medical Foods Equity Act

  18. 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

  19. 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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