William Hall looks like any other happy 10-month-old baby. He cries, he eats and he sleeps, growing more and more every day.

Internally, however, William has a malfunctioning gene. When he was only 4 days old, he was diagnosed with adrenoleukodystrophy, or ALD, a rare genetic disease affecting one in 17,000 people worldwide.

William’s grandfather, Park City resident Joey Hall, described ALD as a “ticking time bomb.” Despite his early diagnosis, it’s impossible to predict how the disease will affect William’s body until he’s older, but it has the potential to be fatal.

That’s why Joey is raising money to fund scientific research and find a cure alongside his son and William’s father, Tyler.

“What we quickly saw is, on the positive side, there’s a ton of collaboration and momentum behind research happening right now, and these are extremely established, prestigious people that are working to try and find a cure for ALD,” Tyler said. “We were equally shocked by the amount of funding that they’re receiving and looking at the landscape of medical research and how we pour billions of dollars into a ton of very common diseases, but it’s these rare diseases that are in some ways easier to fix because they impact just a single gene and we know what the problem is. There’s not as much funding going toward them.”

ALD affects the gene responsible for breaking down long chains of fatty acids in the body. As a person with the disease gets older, their body accumulates a buildup of those fatty acids, which can impact the brain, spine and adrenal glands.

Not every person with ALD has all three forms. But if a child develops the cerebral form affecting the brain, the outcome is fatal. Bone marrow transplants can help slow down the disease’s progression, but there is currently no cure for any form of ALD.

The Hall family lives in Texas, which has an ALD screening process for newborns. When William was diagnosed four days after his birth, neither Tyler nor Joey had ever heard of the disease.

“The critical part of the newborn screening is they can put William in a protocol where he’ll get MRIs starting when he’s 2 until he’s 12, basically every six months,” Joey explained. “William looks perfectly healthy right now, but for people that didn’t have that flagged, once the disease sets in and you start to notice systems, which are behavioral changes, sight changes, things like that, by the time that happens, it’s too late to do anything about it. That’s why this newborn screening is so critical.”

There are five main research centers studying ALD, including a University of Utah laboratory led by Dr. Joshua Bonkowsky. Joey and Tyler said they intend to primarily support research at the University of Utah and Massachusetts General Hospital in Boston, where William is also an established patient, but they’re open to funding research at the other centers if opportunities arise.

“Gene editing, gene therapy, those are things that are progressing exponentially, and because it’s a monogenetic disease, meaning a single gene, gene editing and gene therapy show great promise, but it’s just not there yet,” Joey explained.

Joey moved to Park City in 2021 and had a successful career in the energy business, which is now allowing him to fund ALD research to help his grandson. He seeded the research fund with $1 million of his own money in December and agreed to match other donations from within the Hall family’s internal network dollar-by-dollar for another million. 

By last week, the Hall family had fundraised $2 million of their $3 million goal.

“We’re about to begin entering the phase of giving grants and soliciting proposals from the various research labs on exactly how they’ll use the money, what they’ll use it for and some clear deliverables on what we expect to see this time next year,” Tyler said.

Joey added, “I’m beginning to believe this is a high number, but we estimate that less than $5 million a year total is spent on ALD research. Two of the hospitals that we visited, one of them had a budget of $400,000, and another had a budget of $500,000. I can’t imagine the other three are that much more, so my guess is the total funding per year is way less than $5 million, which tells you that this can definitely make an impact.”

Tyler said he hopes there will be more treatment options within the next five to 10 years if research projects can be thoughtfully funded. The family is now also accepting donations from the public and pursuing partnerships with other organizations that may be interested in finding a cure for ALD.

“Like my dad says, there is this ticking time bomb that we don’t know when it’s going to go off,” Tyler said. “We’re essentially in a race against that clock to find a cure for him and for everyone else. Every week, there’s a baby born that gets this diagnosis, and the thing they see when they Google it is that it’s fatal with no cure and involves some incredibly high risk treatments. We want, for our sake and for everyone else’s sake, whenever they Google that to see more options on the table and not spend the first year of their newborn baby’s life worrying about what’s to come in the future.”

More information on the Hall’s fundraising campaign is available at willtocureald.org.

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Locals participated in the March for Science on Main Street to support fact-based research and celebrate Earth Day Saturday morning, April 22, 2017. The group heard from a few speakers and were invited to more formal presentations from local scientists at the Jim Santy Auditorium in the Park City Library following the event. (Tanzi Propst/Park Record)

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