About Giving Tuesday November 28, 2023

Please join us for #GivingTuesday & help us fight to expand ALD newborn screening!
The ALD Alliance helps families across the United States that are newly diagnosed with adrenoleukodystrophy (ALD) by giving them the resources they need to fight this rare and devastating disease.  This fight begins by making sure every baby born in the United States is tested at birth for ALD. 

As of November 2023 there are 12 states that are still NOT testing all of their babies for ALD.

We also strive to support and encourage those afflicted and their families as they struggle to endure, adjust and cope with the demands of the disease.  In addition to advocating for ALD newborn screening, this year we also:
  • Advocated for federal funding so that ALD and other federally recommended conditions may be added to state newborn screening panels through the CDC's grant program.  Two states are currently using the funding to add ALD to its panels, and three others are using funds to expand their panels to include other RUSP conditions.
  • Provided assistance to EIGHT state newborn screening programs as they implemented ALD onto their panels and submitted two formal nominations to states requiring legislative rule making to add a new condition 
  • Hosted our first IN-PERSON ALD Standards of Care Conference since the COVID-19 pandemic
  • Served as expert contributors to the Every Life Foundation's The Cost of Delayed Diagnosis in Rare Disease report
  • Sent out 50+ care packages to families across the United States receiving an ALD diagnosis for their newborn baby
  • Hosted TWO virtual town halls on the recently FDA approved gene therapy treatment for childhood cerebral ALD
  • Completed our Psychological Impact of ALD online resource

Your generous gift will help us continue our lifesaving work. 
Have 60 seconds?  Watch our mission video: