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Inauguration of The Moser Center at The Kennedy Krieger Institute

November 20, 2013 by Brian's Hope

Jean and Brian recently traveled to Baltimore for the exciting inauguration of The Moser Center at The Kennedy Krieger Institute, an internationally recognized institution dedicated to improving the lives of individuals with disorders of the brain, spinal cord, and musculoskeletal system. The Moser Center for Leukodystrophies is named in honor of the late Dr. Hugo …Read More

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

Ceremonial Bill Signing for ALD Screening with Governor Malloy in Hartford

August 23, 2013 by Brian's Hope

We continue to work towards a day when no little boy will have to face the challenges Brian has and we’re now one step closer to making newborn screening for ALD a reality in Connecticut! In August, the Kelley family was honored to attend the ceremonial bill signing with Governor Malloy in Hartford. The newborn …Read More

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

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

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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