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ALD Families Support Senate Bill 465

March 1, 2013 by Brian's Hope

Many families affected by ALD came out on February 27th in support of Senate Bill 465, which would make testing for the devastating disease standard for all newborns. Here, Jean and Brian are joined by Lee Giordano and her 13 year old son, Stevie, and Eliza Florian, who holds a photo of her precious son, …Read More

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

Branford Family Fights for Early Testing of Rare Disease

February 26, 2013 by Brian's Hope

By Jennifer Swift – The New Haven Register
 jswift@nhregister.com / Twitter: @nhrswift BRANFORD — What if there was a test to tell parents their son had a life-threatening illness? What if there was a cure to stop that debilitating illness? For a disease known as adrenoleukodystrophy, both exist, though little boys are still dying from …Read More

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

State Senate Bill 465

February 23, 2013 by Brian's Hope

Can you help us? Senate Bill 465, an Act Requiring Newborn Screening for Adrenoleukodystrophy has referred to the Public Health Committee with a public hearing scheduled for Wednesday, February 27, 2013. Email our State Representative to let them know you support passage.

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

Rare Disease Day

February 22, 2013 by Brian's Hope

Brian, and his mom Jean, are busy preparing for giving testimony at Legislative Office Building on February 27, then heading to Rare Disease Day event February 28 to speak about adrenoleukodystrophy (ALD). ALD is one of 6,000 rare diseases recognized on Rare Disease Day, occurring worldwide.

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

Newborn Screening

February 12, 2013 by Brian's Hope

This year, the nation celebrates 50 years of Newborn Screening. A goal of Brian’s Hope is that the test for ALD will be added to the existing panel of the newborn screening tests, given to newborns here in CT. We are working with our legislators to make this happen. Our bill is Senate Bill 465, …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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