Park City resident’s million-dollar promise to help find cure for grandson’s disease

Photo: by Hall Family

When a newborn baby was diagnosed with a fatal genetic disorder, his grandfather - a Park City resident - responded by pledging $1 million in matching donations toward a $3 million research fund that could help find a cure for ALD

PARK CITY, Utah — For Tyler Hall and his wife, Taylor, the joy of bringing home their newborn son, William was quickly replaced by a whirlwind of emotions. At just five days old, William was flagged during a newborn screening for X-linked adrenoleukodystrophy (ALD), a rare and potentially fatal genetic disorder.

“We got the call from our pediatrician on a Friday afternoon,” Tyler Hall said. “Doctors told us not to worry yet, but we spent the weekend Googling ALD. Everything we read said it was fatal. That was the hardest part—imagining the life we thought William would have and realizing it wasn’t going to look the way we’d hoped.”

A Lifetime of Monitoring and Uncertainty

ALD is caused by a mutation in the ABCD1 gene, which prevents the body from breaking down very long-chain fatty acids. These fatty acids build up over time, leading to severe outcomes, including adrenal insufficiency, cerebral ALD, and spinal degeneration.

“For William, this means starting brain MRIs every six months when he turns two and continuing for the rest of his life,” Hall explained. “If they detect any signs of cerebral ALD, we’ll need to pursue a bone marrow transplant or gene therapy. It’s terrifying as parents to think about those possibilities.”

Taylor Hall, William’s mother, was also diagnosed as a carrier of ALD, adding another layer of complexity. “We’re not just fighting this for William,” Tyler Hall said. “We’re fighting it for Taylor and for every family out there facing the same uncertainty.”

Creating “Will to Cure ALD”

Determined to make a difference, the Halls founded the “Will to Cure ALD” fund to raise $3 million for research and treatment development. “After months of processing and reframing what our future looked like, I called my dad and said, ‘We’ve been given great resources and connections. We can’t sit back and do nothing,’” Hall said.

Joey Hall, William’s grandfather and a Park City resident, pledged $1 million to match contributions to the fund. “His generosity blew me away,” Hall said. “It brought me to tears. That’s when it became clear—maybe this is happening to us because we’re in a position to make an impact.”

The fund has already reached two-thirds of its $3 million goal, with support pouring in from the family’s network and beyond. “We’ve been emailing people we know, sharing our story, and doing what we can to spread the word,” Hall said. “We’re hoping stories like this one help us reach people who don’t know us but feel compelled to join our cause.”

A Focus on Research and Collaboration

The Halls have partnered with leading institutions, including Massachusetts General Hospital and the University of Utah. “The University of Utah has an incredible ALD research lab,” Hall said. “They’re one of the two main hospitals we’re planning to fund, and we’re flying out next week to meet their team and establish William as a patient.”

Hall emphasized the importance of supporting researchers who are working toward a cure. “ALD funding is around $5 million annually—nothing compared to diseases like cancer,” he said. “We’re trying to thoughtfully allocate our contributions to projects with clear deliverables and progress reports. Our goal is to provide resources so researchers can focus on solutions.”

Offering Hope to Families Nationwide

For the Halls, the fight against ALD is deeply personal but extends far beyond their family. “When families Google ALD, I want them to see hope,” Hall said. “I want them to know there’s a cure on the horizon—something less risky than the treatments today. No one should have to face the uncertainty we’ve lived through.”

The family is also raising awareness about Be The Match, a national bone marrow donor registry. “William doesn’t have a perfect match in the registry yet, but we have time,” Hall said. “Signing up is easy, and it can save lives—not just for ALD, but for leukemia and other diseases.”

How to Help

The Will to Cure ALD fund is accepting donations through its website, willtocureald.org. “This fight is about William, but it’s also about every child and family facing this diagnosis,” Hall said. “We want to give these kids a chance at a normal, fulfilling life.”

Despite the challenges, Hall remains hopeful. “William is a perfect baby in every way,” he said. “We’re creating the same memories with him that we did with our daughter, and we’re trying to make his life feel as normal as possible. These checkups and challenges will just be blips in the road of a long, fulfilling life.”