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We did it!

June 7, 2013 by Brian's Hope

We did it! Our bill to provide testing of newborns for ALD has been signed into law by Governor Dannel Malloy! Brian’s Hope will be working with the state Department of Public Health in the coming months to see how the new law can best be implemented so this insidious disease is detected early in …Read More

Filed Under: Brian's Hope News, Progress of Newborn Screening

17th Annual Hammerfest Triathlon and Fun Run

May 1, 2013 by Brian's Hope

It’s that time again! The 17th Annual Hammerfest Triathlon and Fun Run to benefit Brian’s Hope will take place Sunday, September 15th, 2013 at the Owenego Inn on Linden Avenue in Branford. Register online at Active.com or download the application(s) below, which include directions on registration, pricing and where to send your check. Below is …Read More

Filed Under: Brian's Hope News, Hammerfest Triathlon, Support

Brian’s Beachside Boogie Duathlon

April 1, 2013 by Brian's Hope

Presented by Race Productions, LLC to benefit Brian’s Hope! Sunday, April 14
 Hammonsasset State Park
 Madison, CT Race Start Time: 9:00 AM
 Distances: 2 mile run, 10 mile bike, 2 mile run Click here to register online!

Filed Under: Brian's Beachside Boogie Duathlon, Brian's Hope News, Donate, Support, Volunteer

Senate Bill 465: An Act Requiring Newborn Screening For Adrenoleukodystrophy Passed through the Public Health Committee Monday, March 11

March 12, 2013 by Brian's Hope

By Lisa Reisman – The Shoreline Times 
Published: Tuesday, March 12, 2013 On a crisp early-March Sunday afternoon, a small bipartisan group of state lawmakers came together. Not to grab at each other’s lapels meting out compromise deals in a shadowy cloakroom, but amicably, in the soft-lit Branford living room of Brian Kelley. One pressing …Read More

Filed Under: Brian's Hope News, In the News..., Progress of Newborn Screening, Support

We Celebrate the 1-Year Anniversary of Aidan’s Law

March 12, 2013 by Brian's Hope

Thanks to Elisa Seeger (pictured), it has been 1 year since New York State passed ‘Aidans Law’ to screen all newborns for ALD. After her own son passed away from the disease, Seeger has showed extreme passion to save lives and has pushed to have the law enacted nationwide. Since the law has been passed …Read More

Filed Under: Brian's Hope News, Progress of Newborn Screening, Support

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Updates

Latest News on ALD

Recent Posts

  • FDA Grants Breakthrough Therapy Designation to Lenti-D™ for the Treatment of Cerebral Adrenoleukodystrophy May 24, 2018
  • California Begins Newborn Screening for ALD October 3, 2016
  • 20th Annual Hammerfest was an Amazing Success October 3, 2016
  • Press Conference on ALD Newborn Screening Success Held in Connecticut September 2, 2016

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