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!
Senate Bill 465: An Act Requiring Newborn Screening For Adrenoleukodystrophy Passed through the Public Health Committee Monday, March 11
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
We Celebrate the 1-Year Anniversary of Aidan’s Law
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
ALD Families Support Senate Bill 465
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
