About Alison and Nic

Alison and Nic Adler became part of the ALD community in 2017, when California’s newborn screening program flagged possible ALD in their son Lucas. As they learned more about ALD and what monitoring would mean for Lucas, they connected with other families and found ways to turn their fear into action.

They’ve served as peer mentors for ALD Connect, founded The Lucas Project, co-created ALD Family Weekend, and served on bluebird bio’s parent board. Through The Lucas Project and the Virginia B. Toulmin Foundation, they’ve helped fund research and support families affected by ALD.

Their perspective changed when genetic testing showed that Alison’s father, then 74, shared Lucas’s ABCD1 variant and had lived for decades without symptoms the family recognized as related to ALD. He and Lucas also share a birthday, exactly 70 years apart. Their family’s experience, along with the other families they’ve met who share the same variant, continues to shape their support for research and more individualized care.