Camas Family Launches Nonprofit After Son's ALD Diagnosis

A routine genetic screening during pregnancy became the catalyst for a Camas family's mission to change the future of rare disease research.

Terry Wiener was expecting her second child in 2024 when doctors discovered she carries the gene for adrenoleukodystrophy (ALD), a devastating neurological condition. The disease can rob children of their ability to walk, talk, see, and ultimately survive.

Because ALD links to the X chromosome, each of her children faced a 50 percent chance of inheriting the gene. Males are disproportionately affected by the condition's most severe symptoms.

Terry and her husband Adam immediately had their 3-year-old son Theodore tested. The results came back positive.

Instead of letting fear paralyze them, the Wieners chose action. They founded a nonprofit dedicated to funding research for an ALD cure, transforming their family's diagnosis into a lifeline for others facing the same battle.

ALD affects roughly 1 in 17,000 people worldwide, making research funding notoriously difficult to secure. Rare diseases often struggle to attract the resources needed for breakthrough treatments because they affect smaller patient populations.

The Wieners understood that waiting for someone else to solve the problem wasn't an option. Theodore's diagnosis gave them both urgency and purpose.

Their nonprofit aims to accelerate research by connecting scientists, funding promising studies, and raising awareness about a condition many people have never heard of. Early detection through newborn screening can be life-saving, but not all states include ALD in their screening panels.

The family joins a growing movement of parents who've become unexpected advocates and fundraisers. When traditional systems move too slowly, these families create their own paths forward.

The Ripple Effect

The Wieners' nonprofit could help more families than just their own. Every dollar raised for ALD research brings the medical community closer to effective treatments and potentially a cure.

Their work also shines a spotlight on the importance of genetic screening and newborn testing. Awareness saves lives, and families who know to watch for early symptoms can intervene before irreversible damage occurs.

By sharing Theodore's story, the Wieners give other families something precious: they're not alone in this fight.

Research into rare diseases often yields unexpected benefits for more common conditions too, as scientists unlock new understanding of how genes, cells, and treatments work.

One family's love for their son is now becoming a beacon of hope for countless others navigating the same frightening diagnosis.