News     Calendar    Donate Facebook Badge_Light GreyTwitter Badge_Light GreyInstagram Badge_Light GreyYoutube Badge_Light Grey  
 
 
  Green Line_Homepage
 


Media Archive
Jim & Jill B&W
View media coverage of
Etched...Upon My Heart
and
New York Times
Best Seller

Without A Word


News & Media

Oct. 2014 - PA Legislature Passes Hannah's Law Mandating Newborn Screening for Krabbe and Similar Disorders

Hannah's LawBy a unanimous vote, Pennsylvania state senators passed Hannah’s Law (HB 1654), a bill mandating newborn screening for Krabbe and five similar disorders. The bill is named in honor of Pennsylvania’s Hannah Ginion, who is affected by Krabbe Leukodystrophy, but was diagnosed after the disease was too far progressed for the only available treatment. The bill officially became law when signed by Governor Tom Corbett.

In addition to the 33 diseases currently on the state’s newborn screening panel, Hannah’s Law mandates that all babies born in Pennsylvania undergo newborn screening for Krabbe Disease and five other Lysosomal Storage Disorders – Fabry, Gaucher, Pompe, Niemann-Pick A/B and Hurler’s Syndrome.

Read More About HB 1654      Read More About the Signing of Hannah's Law

 

Jan. 2014 - Hunter James Kelly Research Institute Shows  How Different Variations of Krabbe Disease Correlate with MRI Results

MRI & Jacqueline ScottResearch findings recently published in the Journal of Pediatric Neurology show that magnetic resonance imagining (MRI) abnormalities, when considered with typical clinical signs and symptoms of Krabbe Disease, are indicative of specific disease outcomes. These findings should help promote earlier diagnosis of later onset forms of the disorder, thus facilitating timely treatment.

“Our study confirms the existence of distinct age-related differences in the appearance of MRI scans, especially amongst different versions of the disease: early infantile, later onset, and adolescent/adult,” shared Patricia Duffner, MD, co-author of the study and Founding Director of the Hunter James Kelly Research Institute.

Read Full Press Release            Read Article Abstract

 

Media Guest Book  - Register here if you are a member of the media and would like to be added to our press release distribution list.

*  


*  


*  


*  


   


*  
Visually impaired? Click here to have an audio challenge played.  You will then need to enter the code that is spelled out.
Change image
CAPTCHA image

   Please leave this field empty


     
 
 HH Logo and Type_Vertical_Grey Background

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to
give you hope and a future." 
Jeremiah 29:11 

 


About Us

Mission
Hunter
Kelly Family Story
Hunter's Hope Team

Research
HJKRI Clinical Center
HJKRI Basic Science Center
Extramaural Research
Medical & Science Symposium
Research Publications
Historical Research

 


Krabbe and Leukodystrophies

About Krabbe
About Leukodystrophies

Newborn Screening
What is NBS?
Krabbe NBS
State and Federal Info
Take Action
Families Taking Action
Supplemental NBS
Why NBS?

 


Family Care

Wall of Fame
Affected Family Registration
Hope for Life
Family & Medical Symposium
Hunter's Homes
Equipment & Supply Exchange
Hunter's Wish Gift
Kaden's Kisses

 


Get Involved

Jim Kelly's Every Score
Jill Kelly's Every Sister
Every Step Walk
Special Events & Campaigns
Hunter's Day of Hope & Prayer for Children
Strategic Partners
Volunteer

News

Calendar

Donate

   
  6368 West Quaker Street, PO Box 643, Orchard Park, NY 14127 |  (716) 667-1200