Is anyone actively working on trying to get the newborn screening for ALD part of the newborn screening panel in their state?
I want to try to advocate for this in IL (my son has PBD, which is also picked up by the test). While there are no treatment options yet for PBD, the earlier a family can know their son has ALD the more options for trying to delay the onset of symptoms.
If anyone is working on this for their state, let me know - I'd like some input on how to get started. Also, if there are any X-ALD parents who live in IL, please reply as well. Thanks!