Patients and Families

REGIONAL NEWS!

In Memoriam:
It is with extreme regret that I inform you that Dr. Kelley, Laboratory Director, passed away on Saturday, December 29. Dr. Kelley was a
nationally known scientist and we were fortunate to have her expertise and dedication at our state laboratory for the past 8 years. At thistime arrangements are incomplete but we will be sure to notify you when
we hear of them.
Dr. Kelley was responsible for many important changes and innovations at the laboratory, most significant of which is the planning that is currently underway for the new state laboratory. Her love for her job
was apparent to everyone who knew her; she will be greatly missed.
- Robert Galvin

Great news to share!
February 15th, Governor Patrick signed into law H. 3174, An Act designating May 24 as Phenylketonuria Awareness Day. Now Chapter 32 of the Acts of 2008 declares that May 24th will forever officially be PKU Awareness Day. Congratulations to all! This is the first of many steps in creating
better recognition of PKU!

H I G H L I G H T S

PKU Toolkit

The PKU Toolkit is now online and ready to use! Sponsored by The New England Consortium of Metabolic Programs, Children's Hospital Boston and Applied Nutrition Corp.!

Click here to visit!

Click here for more information about the 2008 Teen Challenge!

Transition: Psychological Considerations

A presentation by Susan Waisbren, PhD

Children's Hospital Boston

Click here to download the file!

metcamp 2008

14th Annual Metabolic Camp
Department of Human Genetics
Division of Medical Genetics- Metabolic Nutrition Program
June 23-28, 2008 Emory University Atlanta, GA

Click here for more information!

woman sitting on a bench Transitioning Youth With Chronic Illness
Clinical Updates, Tools & Strategies for Successful Transition
April 17, 2008 7:30am-4pm
Holiday Inn 172 N. Main St. Concord, NH 03301

For details call: 603-224-1909

Click here for more info!

The my low phe pregnancy website is a site for women with PKU who are planning to become or are already pregnant. Find solutions to staying on diet prior to and throughout pregnancy from your peers! View information as a visitor or post your story to share with others. Information from local medical profesionals, PKU suppliers, and PKU tools also available.

Please note that the URL has changed! The my low PHE we site is now located at
http://www.newenglandconsortium.org/myphe

YMCA Logo

Upcoming PKU Summer Camp!

Children's Hospital Boston will be holding it's annual summer camp, in conjunction with the South Shore YMCA Camp Burgess & Hayward, August 17 - 22 2008. All children 7 - 15 years of age with PKU are invited to attend the one week overnight camp in Sandwich, MA on beautiful Cape Cod.

This is a wonderful opportunity for kids with PKU to meet other kids with the same issues they are facing, while in a normal camp environment. Campers stay in cabins and participate in a specialty activity of their choice, such as sailing, tennis, music, windsurfing and horseback riding. Metabolic staff and nutritionists will be available at the camp to provide low-protein meals and aid with formula and maintaining diets.

More information on camp contact Vera Anastasoaie at Children’s Hospital Boston at 617-355-7346. For registration information, please contact the camp directly at www.ssymca.org or call 508 428-2571.

NEWS ALERT for MASSACHUSETTS PARENTS!

Rep. Christine Canavan, who is an RN
and a MASSACHUSETTS STATE REPRESENTATIVE has authored legislation (5 bills) to increase funding/coverage for PKU foods, etc.She needs your help to pass these bills by calling your local state rep and asking them to support these bills!

Click here for more information and a sample phone call!

March of Dimes logo

The English and Spanish versions of the March of Dimes Newborn Screening video is now available on YouTube!

Click here to watch the English version!

Click here to watch the Spanish version!

AAP Newborn Screening Fact Sheets are now available from the Pediatrics website!

Click below to download !

Introduction to the Newborn Screening Fact Sheets

Newborn Screening Fact Sheets

Follow-up to Newborn Screening: A Guide for Parents

Click here to download the new brochure!

PKU - What , How and Why ?
This wonderful resource uses animations and graphics to illustrate the causes of PKU, how PKU is diagnosed, and how it is inherited. Click on the links below to view the presentations.

New PKU Cookbook
What Can I Eat?

It's a new book that contains hundreds of ideas and recipes. It was written with adults in mind, but would be helpful to anyone with PKU. View the PDF for more information as well as ordering instructions.
Download PDF

Historical Videos

Educational videos on the history of newborn screening, the discovery of Phenylketonuria (PKU), the discovery of the diet for PKU, and the Newborn Screening Test.

Go to Historical Videos

International PKU Web Board

This new PKU web forum aims to connect people from all over the world. It allows you to search for products, ask questions about PKU, discuss articles and new inventions. Communicate with other people with PKU - discuss problems, look for new recipes in the recipe section, and search the categorized link-archive for posted articles about PKU.

Visit this PKU Web Board

PKU Worldlink
A resource for people with PKU across the world.

University of Washington PKU Clinic Team
Features PKU resources and information, including helpful downloads for parents.Click here for a listing of documents.

MNG Clinic
Children's Hospital Boston
300 Longwood Ave, Boston MA 02115
Jonathan Picker, MD, PhD
Susan Waisbren, PhD
Kimberly Pasley, PsyD
Isabel Bailey, LICSW
Download PDF

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