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
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!
Save the Date!
The New England Consortium of Metabolic Programs Annual Meeting will be held on Friday November 21, 2008 from 8:30am-3pm at Tower Hill Botanic Garden in Boylston, MA.
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!
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!
Region 3 will be hosting a metabolic nutrition conference April 24-26,
2008, at the Emory Conference Center Hotel in Atlanta, Georgia. This
conference will provide the attendee with an update on expanded newborn
screening and the management of various inborn errors of metabolism.
The title of the conference is "Bridging Science and Clinical Practice."
We would like for each region to consider sending 1-2 nutritionists to
this conference. Limited partial scholarships are also available.
Please see the attached brochure for additional information.
Space is limited so early registration is recommended.
Click here for the brochure!
Click here for the scholarship application!
ATTENTION LOCAL METABOLIC CENTERS!
We need your support regarding the 5 bills currently in the Massachusetts Legislature regarding support for treatment of disorders detected by newborn screening!
For more information about how you can help, please click here!
For a quick summary of the 5 proposed bills, click here!
SUNDAY, JUNE 29TH 2008 AT 5:00 P.M.
FUND RAISER FOR NECPAD (New England Connection
for PKU and Allied Disorders, Inc.)
Click here for more info!
Susan Waisbren will be running the Boston Marathon for PKU and Metabolic Disorders on Monday, April 21, 2008. She run last year, and made it to the finish line in just over 4 hours! She says it really helps to see you along the way. Look for her in a pink T-shirt that says PKU on the front. The Marathon starts at 10:30 am this year, so she'll be coming along sooner than before. She doesn't run fast, but she promises to finish.
For more information please click here!
Newborn Screening in Connecticut"
The free web-based training on newborn genetic and metabolic disorders, including hearing loss, is now live!
For more information please click here or access the training at:
http:// www.genetrain.org
NEW Resources for New England GCs & Other Health Care Providers!
Click here for the announcement!
AAP Newborn Screening Fact Sheets are now available from the Pediatrics website!
Click to below to download !
Introduction to the Newborn Screening Fact Sheets
Newborn Screening Fact Sheet
Download the Newborn Screening Q&A document!
This Q&A document identifies questions commonly asked by parents when they are notified about the need for follow-up testing for their infant.
American College of Medical Genetics
ACT Sheet and Algorithm Utility Survey
Follow-up to Newborn Screening: A Guide for Parents
Click here to download the new brochure!
New Genetic
Services Policy Project (GSPP) Web site http://depts.washington.edu/genpol
The new Web site features:
A description of GSPP's
goals, objectives, and activities
A list of GSPP
collaborators, staff and advisors; and -Links to related resources such as
project materials, related Web sites, peer-reviewed articles,
and
government, trade, and organization reports on issues related to genetic services.
For example, you will find a link to a
recently published article co-authored by one of our investigators,
Dr. David Veenstra, on the Web site's home page.
The Resources page provides links to recommended
reading, slide presentations given by GSPP staff, and a
list of Web sites for the organizations represented by
members of the GSPP advisory committee.
A literature database will soon be added
to the Resources page, so check in often to see what is
new.
You can view biographies of the
project's investigators and advisors from the Personnel
page.
In
addition, the Advisor's page provides links to the Advisory
Committee Meeting agendas, minutes, and handouts.
-
This Web site is a dynamic tool that
is intended to make the project's resources easily accessible.
http://depts.washington.edu/genpol
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
