After her grandson was diagnosed with a rare genetic disease, Albuquerque City Councilor Renée Grout and her family were stunned to find the lack of research on the condition. Now they have created a $3 million fund in hopes of advancing research and treatments.
“We’re trying to not just fund this research, but bring awareness to this disease,” Grout said.
Adrenoleukodystrophy (ALD), is a genetic condition that can prevent the body from breaking down long chain fatty acids. The acids building up over time can cause damage to nerve cells in the brain which could lead to mobility issues and even paralysis over time.
Grout’s grandson William was diagnosed with ALD when he was a month old. This was the first time William’s parents, Taylor and Tyler Hall, heard of ALD. Taylor was diagnosed as a carrier of ALD shortly after the discovery.
“This was something we didn’t even know what the word was,” Taylor said.
Grout said all the “worst things” come up when researching the condition, such as fatal issues that can happen if it is not flagged early on. Taylor and Tyler noted they were fortunate to be in Texas, where screening newborns for ALD is mandatory.
In 2016, the secretary of the U.S. Department of Health and Human Services recommended states add ALD to its neonatal screening programs. While most states added ALD screening, some have not. Texas made it mandatory to screen all newborns for ALD in 2019 and New Mexico did the same in 2023.
“New Mexico has the newborn screening, which is great,” Grout said. “Otherwise, I’d be going up to Santa Fe advocating for it.”
After about six months of processing the news, Tyler said there was “a little bit of frustration on just a lack of total funding going towards (ALD)” and he and Taylor decided they wanted to make a difference for their son and others diagnosed with the disease.
“Nearly every single state has [screening], except for, I think, two or three at this point,” Tyler said. “We hope we just kind of raise awareness to it, and that drives those legislators to approve adopting testing for ALD. But our core focus is: Let’s kind of have more solutions for those families that when they get the diagnosis, they don’t see what we see, which is fatal without a cure and leads to lasting impacts under certain scenarios. Our goal is kind of to address the problem and have that diagnosis not be as daunting as it was to us.”
The Hall’s started the “Will to Cure ALD” fund by contacting ALD Connect, then they got the Massachusetts General Hospital — where William’s doctor is — and the University of Utah Health on board. Their goal is to raise $3 million for the organizations and within a month, they have already raised almost $2 million.
“My parents put forth a million-dollar commitment and are also matching every donation until we hit the goal,” Tyler said. “About 150 people have donated. We’ve had pledges ranging from $25 to $100,000 and I think we’ve been blown away by every single one…We’ve tried to keep up with just making sure everyone feels our gratitude towards them.”
Grout said she’s grateful for her grandson’s team of doctors, but also of his parents.
“I’m very proud of them,” Grout said. “I’m grateful that William has a good team of doctors in place and he has great parents that are advocating for him.”
Read more about the Hall’s story and their initiative here.