Giving Tuesday November 29, 2022
Help us continue to advocate for newborn screening for ALD!
Please join us for #GivingTuesday and help us fight to expand newborn screening for ALD!
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 2022 there are 20 states that are still NOT testing 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. This year, five states were awarded funding to improve their newborn screening programs. Two will use the funding to add ALD to its panels.
- Testified during the FDA Advisory Committee's review of eli-cel gene therapy treatment for cerebral ALD
- Hosted our second virtual ALD Standards of Care Conference and began planning for our first IN-PERSON conference since the pandemic
- Pivoted from an annual ALD Newborn Screening Roundtable to QUARTERLY meetings to help the influx of states beginning to screen and encourage uniformity in screening
- Hosted an in-person "ALD Family Day" for families that had registered to attend the annual conference before it had to be switched to a virtual format due to the Omicron variant surge
- Sent out 41 care packages to families in 18 states receiving an ALD diagnosis for their newborn baby
- Sent care packages to ALD families with boys heading into transplant
- Created the Psychological Impact of ALD psychosocial support section of our website
- Published "Coping with an ALD Newborn Screening Diagnosis" booklet for newborn screen families and began designing the next section, "Preparing for Cerebral ALD Treatment."
- Co-authored a medical publication in the International Journal of Neonatal Screening on ALD highlighting screening disparity amongst states
Your generous gift will help us continue our lifesaving work.
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