Camas family starts nonprofit to find a cure for rare disease that affects their son

Race to Cure ALD 5K fundraiser set for September in Washougal

Theodore Wiener, 5, right, waves to his mom Terry Wiener, left, during a game of Sorry! on Tuesday at the Wiener residence in Camas. (Taylor Balkom/The Columbian)

The Wiener family — Ella, 1, clockwise from left, Terry, Theodore, 5, and Adam — play a game of Sorry! on Aug. 25 at the Wiener residence in Camas. Terry and Adam Wiener founded Cure ALD after their son, Theodore, was diagnosed with adrenoleukodystrophy, a rare genetic disease that can cause devastating neurological and adrenal damage. (Taylor Balkom/The Columbian)

Theodore Wiener, 5, plays with magnetic building squares Aug. 25 at the Wiener residence in Camas. Theodore was diagnosed with adrenoleukodystrophy, a rare genetic disease that can cause devastating neurological and adrenal damage. (Taylor Balkom/The Columbian)

The Wiener family — Adam, clockwise from left, Terry, Ella, 1, and Theodore, 5 — hang out Tuesday at their home in Camas. Terry and Adam Wiener founded Cure ALD after their son, Theodore, was diagnosed with adrenoleukodystrophy, a rare genetic disease that can cause devastating neurological and adrenal damage. (Taylor Balkom/The Columbian)

Terry Wiener, from left, hugs her son Theodore, 5, as dad Adam blows up a soccer ball and daughter Ella, 1, watches at the Wiener residence in Camas. (Photos by Taylor Balkom/The Columbian)

Terry and Adam Wiener founded Cure ALD after their son, Theodore, was diagnosed with the rare genetic disease. They are organizing a September fundraising run.

At right, Theodore Wiener, 5, center, slides down a small slide while his family hangs out at their home in Camas.

Photos of Theodore and Ella Wiener hang on a fridge Aug. 25 at the Wiener residence in Camas.

While pregnant with her second child in 2024, Terry Wiener had a routine genetic screening that revealed she carries the gene for adrenoleukodystrophy, a rare and devastating neurological disease that can rob children of their ability to walk, speak, see and survive.

Because ALD is linked to the X chromosome, each of her children had a 50 percent chance of inheriting the gene, which disproportionately affects males. Wiener and her husband, Adam, immediately tested their 3-year-old son, Theodore. His test came back positive.

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