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
Branford Family Fights for Early Testing of Rare Disease
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
State Senate Bill 465
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.
Rare Disease Day
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.
Newborn Screening
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
