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The Newborn Screening Alliance is a program of The ALD Alliance, which was established in 2012 as an ALD newborn screening advocacy organization. It was created to honor the memory of Aidan Jack Seeger, a boy from Brooklyn who lost to his life to a disease that had both a valid newborn screening test and treatment...if only he and his parents had access to an early diagnosis that would have saved his life.
Aidan’s story is not unique. It is happening to children across the country, despite the rapid advancements in rare disease research and FDA-approved treatments. Through federal and state advocacy, institutional engagement, and public awareness, the goal of The Newborn Screening Alliance is to advocate for newborn screening nationally and to work towards streamlining the newborn screening process creating a more equitable system nationwide leading to saving our babies through early diagnosis. |
2025 Initiatives:
- Legislation to eradicate death by zip code (see below)
- Advocate for RUSP screening for all military personnel
- Dried blood spot education & advocacy for retention for research (amici briefs filed in Michigan & NJ)
- Continuing efforts to push for the termination of the ongoing pilot in Massachusetts. allowing all federally approved conditions be screened population-wide so no babies are missed
Our mission is to advocate for ALD newborn screening & newborn screening for any disease with both a treatment and a newborn screening test that works.
This foundation's advocacy is always occurring on two levels: in the states and at the federal level. We don't want to live in a country where a zip code or state line could be the difference between life or death for a child. And we know you don't either.
The Recommended Uniform Screening Panel (RUSP) is a list of disorders that the Secretary of the Department of Health and Human Services (HHS) recommends for states to screen as part of their state universal newborn screening programs.
Disorders on the RUSP are chosen based on evidence that supports the potential net benefit of screening, the ability of states to screen for the disorder, and the availability of effective treatments. It is recommended that every newborn be screened for all disorders on the RUSP.
The following conditions are on the RUSP, but are not yet being implemented in every state:
~ALD
~GAMT
~Krabbe
~MPS I
~MPS II
~Pompe
Our goal is to ensure that every state has the funding it needs so that each state newborn screening lab is capable of testing its babies for ALL RUSP approved conditions.
In other words, eradicate “death by zip code.”
We continue to press Congress, HRSA, and the CDC to improve the process by which diseases are added to the federal Recommended Uniform Screening Panel and streamline desperately needed funding to our state's newborn screening programs so diseases with a valid newborn screening test and treatment may be added to state panels as soon as possible. Thank you to Congressman Balderson (Ohio) who met with us during the Summer of 2024 and shares our concerns.
Thank you to Congressman Lee Zeldin and Congresswoman Yvette Clarke for sending Dear Colleague letters in 2020 and 2021 for our previous appropriations request for CDC funding towards the agency's former newborn screening state grant program.
We are forever grateful for this support in New York, where screening for ALD first started.
And thank you to all of our congressional representatives who have supported our appropriations requests in the past (photos below).
We are forever grateful for this support in New York, where screening for ALD first started.
And thank you to all of our congressional representatives who have supported our appropriations requests in the past (photos below).
