On February 17th, 2016, the Secretary of the Department of Health & Human Services, Silvia Burwell, approved the addition of adrenoleukodystrophy (ALD) to the Recommended Uniform Screening Panel (RUSP), the federal list of genetic diseases recommended for state newborn screening programs. The addition of ALD to the RUSP will expedite the process of adding ALD …Read More
Join the Movement and #SaveTheBoys with 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
Golf Tournament Benefiting Branford Lions Club & Brian’s Hope
The Branford Lions Club is pleased to announce that they have once again adopted Brian’s Hope in a Charitable Golf Event on June 4th. The Lions are very excited to be able to support Brian’s Hope in its mission to stop the progression of adrenoleukodystrophy (ALD). Proceeds from the event will be shared by both …Read More
Discussing Newborn Screening with Fifth Graders at Green Acres School in North Haven
We had a great day with Mrs. Savoia and Mrs. Schingh’s fifth graders at Green Acres School in North Haven, discussing the passage of our bill and the importance of newborn screening, and the addition of ALD to the existing newborn screening panel.
17th Annual Hammerfest Triathlon and Fun Run
It’s that time again! The 17th Annual Hammerfest Triathlon and Fun Run to benefit Brian’s Hope will take place Sunday, September 15th, 2013 at the Owenego Inn on Linden Avenue in Branford. Register online at Active.com or download the application(s) below, which include directions on registration, pricing and where to send your check. Below is …Read More
