Help us support our organization during this time of need.
Every day, we try to get one step closer to testing every baby for diseases approved and added to the Federal Recommended Uniform Screening Panel.
Imagine knowing that you child could have been screened for a disease at birth that would have saved their lives, but for whatever reason, you live in a state that is NOT testing for these diseases and your child is permanently disabled or dies?
Right now, each state can decide when to move forward with adding a disease to their newborn screening panel and usually the lag is because of funding. Our foundation has worked tirelessly to change this, with federal bills and just this past February, just before the Covid shutdown, we were working on appropriations language in Congress to change this. Unfortunately, due to Covid all of our fundraising has been put on hold and we are not able to support ALD family requests and continue our work to change newborn screening.