The Woleben family: Lauren, Doug, Will and Kasey (left to right). The family is eager to see a treatment for Will's ultra-rare disease. Courtesy photo
A biotech paused a gene therapy hatched by families. Now they want control
Will Woleben is like many 10-year-olds. He loves to watch sports and play jokes on his little sister. But Will can no longer walk, among other abilities he lost. If nothing is done, he will continue to degenerate and then die at a young age.
His parents — and other families affected by the ultra-rare condition Leigh syndrome — formed the Cure Mito Foundation and raised $1 million to spark a gene therapy. The company Taysha Gene Therapies advanced the drug program. But in March, Taysha paused development.
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