Lobby Congress

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

Posted in Uncategorized | Comments Off

Biomarin PKU Grocery Store Tour – Bloomington, IL

Click Here for Details!

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

Posted in Uncategorized | Comments Off

Pictures from Biomarin’s Cooking Class in Dekalb

Posted in Uncategorized | Comments Off

PKU Culinary Event in Ohio

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.”

Posted in Uncategorized | Comments Off

Family Fund Day at Cosley Zoo

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

Details and Registration Here

Family-Fund_Day2015

Posted in Uncategorized | Comments Off

Pictures from the Biomarin Event at the Field Museum Uploaded

Posted in Uncategorized | Comments Off

Run for rare disease Fundraiser

De-PHEt PKU

Posted in Uncategorized | Comments Off

Andrew Craig Memorial Scholarship

Are you going to college this year and are looking for a scholarship? Don’t forget to apply for the Andrew Craig Memorial Scholarship. The form is in the “Resources” menu.

Andrew Craig Memorial Scholarship Form

Posted in Uncategorized | Comments Off

Disney World PKU-Friendly Food

If you look in the Resources > Traveling Tips Menu, you’ll see a new submenu to Disney’s website which includes a list of PKU-friendly dishes at their restaurants.

Disney World PKU Restaurants

Walt Disney Parks and Resorts is committed to offering a wide range of options for you and your family. In order to assist Guests with their dining choices, we are able
to provide lists of products that may be available. Please note that while we strive to provide as much information as possible, product offerings are subject to change at
any time without notice and may not be available at all locations or at the locations suggested on these guides. Guests should notate any special dietary requests at the
time of booking their dining reservation. Guests may also speak with a chef or manager upon arrival at the dining location.

Posted in Uncategorized | Comments Off

New Events Added!

Click here to see all events. (Or look to the right)

Biomarin Cooking Class

BioMarin Cooking Class in Wisconsin

Cosley Zoo Family Fun Day

Posted in Uncategorized | Comments Off