MACPAD initiated the proposal for National PKU Awareness Month

 

 

Dr. Harold Trick is at Kansas State University

 

 

Kuvan is an experimental drug from Biomarin. It is a synthetic form of tetrahydrobiopterin, which is an enzyme cofactor that helps to work with phenylalanine hydroxylase to metabolize phenylalanine.

 

 

The National PKU Alliance includes local and regional support groups, healthcare providers, researchers, formula companies, pharmaceutical companies, low-protein food vendors, and other individual and corporate partners, united with a mission to improve the lives of individuals and families associated with PKU through research, support, education, and advocacy.

 

 

 

International PKU Teen and Adult Conference

August 15 and 16, 2008
(Plan on arriving the night of the 14th)
Embassy Suites Chicago O'Hare
Rosemont, IL

A small group of PKU teens and adults with PKU from the US, Canada, and the UK have acted as a steering committee to organize the meeting with the strong support and advice of Susan Waisbren, Clincal Psychologist for  the metabolic programs at Boston Children's Hospital, and the  Transition to Adult Care National Workgroup.  The  conference is open to PKU teens age 13+ and PKU Adults, parents of PKU  teens/adults age 13+, spouses, and metabolic health care professionals,  etc.  Topics for the conference include,  but are not limited to: maternal PKU, daily dietary management, nutrition  management issues for adult PKU, transition to adult care,  adult clinics, insurance, and current research.  There will also be  time to visit with vendors and free time in the evenings to relax, socialize and have fun!

 

Additionally, weather permitting, an informal trip to The 50th Annual Chicago Air and Water Show downtown is being planned for Sunday, August 17th.

 

A link to the pdf files for the registration form and the conference agenda is available on the main page of the website pkuworldlink.org.  Many of the details regarding the conference are on these pdf's but please feel free to email Sarah Foster at pkuadult@aol.com with questions.

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