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National PKU Alliance Update
 The National PKU Alliance (NPKUA) has several projects happening right now to improve the lives of individuals with PKU. We hope you will join us in these efforts as we continue to create a strong national voice for the PKU community:
- Medical Foods Equity Act: We need your help today with this federal legislation that would require all insurance companies to cover the cost of medical foods for children and adults with PKU and other inborn errors of metabolism. Our goal is to secure 100 co-sponsors in the U.S. House of Representatives by the end of June. To get involved and make a difference, please visit http://www.npkua.org/index.php/talking-points.
- Driving PKU Research: Last year, our 17 member PKU organizations raised more than $200,000 for PKU research. Through a competitive and scientifically reviewed process, we awarded our first research grants at our High Hopes Inaugural Conference in Dallas earlier this year. We have also established a fellowship program to encourage bright post-doc students to enter the metabolic disease research field in our search for a cure.
- PKU Awareness Month: Organizations across the country are raising awareness and funds for PKU this month and in the months to come. Local organizations are the foundation of our work – in fact, the NPKUA was actually founded by several local organizations around the country! If there is not an upcoming PKU event in your area, we invite you to support PKU Iron Mike, aka Mike Esposito, who will compete in an Ironman competition next month to raise funds for PKU. Visit www.pkuironmike.org to pump up support for PKU!
Thank you so much for all of your involvement and support in our efforts since we launched the organization almost two years ago. By joining together, we can achieve great things in making the lives of our loved ones better with PKU.
Christine S. Brown
NPKUA Executive Director
christine.brown@npkua.org
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