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ALD Newborn Screening has been Approved for the Recommended Uniform Screening Panel!

September 2, 2015 by Brian's Hope

On August 27th at a meeting of the Secretary of Health and Human Services’ Advisory Committee on Heritable Disorders in Newborns and Children in Rockville, Maryland, ALD newborn screening was approved for addition to the Recommended Uniform Screening Panel. This was the culmination of 3 years of work by researchers, practitioners and patient advocates. Approval …Read More

Filed Under: In the News..., Progress of Newborn Screening

Join the Movement and #SaveTheBoys with Brian’s Hope

August 20, 2015 by Brian's Hope

Every 36 hours, a newborn baby is born with adrenoleukodystrophy, also known as ALD. ALD is a genetic disease that attacks the brain and can cause blindness, deafness, loss of muscle control or even death. If detected early, ALD can be treated; however currently there is no mandatory screening for this disease. Join Brian’s Hope …Read More

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

Sad News

October 24, 2013 by Brian's Hope

Sad news today – Augusto Odone, the World Bank economist who defied the medical establishment to treat his son Lorenzo with ’Lorenzo’s Oil’ has passed away. Odone gained recognition with his wife Michaela for their efforts to keep Lorenzo alive after they learned of his ALD diagnosis and its devastating progression. The Odones’ story was …Read More

Filed Under: Brian's Hope News, In the News...

Brian’s Hope: Hammerfest Triathalon Part of ‘ripple effect’ of Foundation Named After Brian Kelley

September 23, 2013 by Brian's Hope

Thank you to The Shoreline Times for this great article about the “ripple effect” of Brian’s Hope! Read it here.

Filed Under: Brian's Hope News, Hammerfest Triathlon, In the News...

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

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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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