Month: March 2015

Join us in May as we lobby on Capitol Hill!

We are pleased to invite you to lobby with us on May 18 and 19, 2015 for the Medical Foods Equity Act (MFEA) in Washington, D.C.! The MFEA would require all federal programs to cover the cost of medical foods (both formula and food modified to be low in protein) for children and adults with PKU and other inborn errors of metabolism.

The lobbying will take place on both Monday, May 18 and Tuesday, May 19. Volunteers will be paired with seasoned advocates for the lobbying appointments. If you can’t make it to D.C. in May, you can still help us by securing appointments for the NPKUA with your member of Congress. If you are interested in joining our efforts in D.C. or making an appointment for the NPKUA volunteers, please contact Amy Oliver at amy@go-ipad.org for more information and materials.

Information is also available on the NPKUA website – click here.

Thank you for your help in advocating for the MFEA! Together we can make our voices heard!

Thank you,
The National PKU Alliance

Click Here for Details!

Also see the events section to the right for more events.

Register Here

Join Chef Andy Broder for a day of of hands-on cooking the low-protein way!

You will take away useful cooking and nutritional tips, as well as a variety of easy and delicious recipes for all members of your family to enjoy. At the end of the event, enjoy the food prepared that evening!

Hear Kendra Bjoraker, PhD, of 3:1 Neuropsychology Consultants, speak about “PKU, Phe Levels, and the Brain.”

Learn about “Daily Treatment with KUVAN® (sapropterin dihydrochloride) Tablets for Oral Use or Powder for Oral Solution.”

Come join us for fun on the farm at Cosley Zoo!

Details and Registration Here