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
Hammerfest 2013 was a great success! A heartfelt thank you to our hosts at the Owenego, the triathletes and Fun Run participants, our steadfast volunteers, sponsors and donors. A major highlight of the day was a proclamation by the General Assembly of the State of Connecticut citing September 15th, 2014 as “Brian Kelley” Day, for …Read More
A huge Thank You from our family to those who rallied likes for our Page and our Cause. And a Thank You and welcome to our new “Fans”. We are working towards the day when no child will experience the devastation of adrenoleukodystrophy (ALD).
We are looking forward to 500 likes! We want to thank you for your support and good wishes as Jean and Brian visited the Legislative Office Building last week. Please, share our this page and story with your family and friends, as we are looking to double our likes in two weeks, ahead of our …Read More
GREAT NEWS!!! We made a trip to Hartford today and met with Senator Terry Gerratana and Representative Susan Johnson, the co-chairs of the Public Health Committee in Hartford to introduce the newborn screening for adrenoleukodystrophy (ALD). We are hoping it will be added to the existing newborn screening panel in CT, a life-saving opportunity. We …Read More