The Aidan Jack Seeger Foundation is excited to announce a new initiative to expand newborn screening for ALD nationally. As you know, Secretary of Health Burwell signed the recommendation to add ALD to the RUSP (Recommended Uniform Screening Panel) on February 16, 2016. With the recent introduction of S.2641 by Senator Charles Schumer of New York and companion Bill H.R. 4692 by Congresswoman Yvette Clarke of New York, the Foundation is working to have every state test newborns for ALD.
S.2641 and H.R. 4692 will reduce the lengthy legislative process that precedes each state’s implementation of ALD newborn screening. The bills offer funding and protocols for patient follow up, thus eliminating the need to pass new legislation in each state.
Newborn screening currently varies widely by state, leading to disparate health outcomes for babies. We know early diagnosis of ALD is the key to saving lives. A child’s life should NOT depend on their zip code and with your help, we can save thousands of lives.