state grants

The Hall familys journey with ALD began when their son was just 1 month old. After a series of tests and consultations, they received the life-changing diagnosis: their son had X-linked Adrenoleukodystrophy, or ALD, a rare and serious genetic disorder. “You’re left terrified,” Taylor Hall, Williams mother, said as she reflected on the moment she received the phone call with her son’s diagnosis. “So the first thing you do is you go to Google even though you know better, but you don’t know anything. And the first thing that we saw was that it was fatal.”ALD is a disease that prevents the body from breaking down long-chain fatty acids, causing them to build up in the body and specifically target the brain and spinal cord. This buildup damages the protective membranes around nerve fibers, leading to neurological impairments and, if untreated, can result in life-threatening consequencesThe news left her feeling overwhelmed, but she knew she had to take actionnot only to advocate for her son, but for other families facing the same challenges.”You’re seeing, they’re not making it out of their childhood,” Hall said. “And so we were just left in tears. It was definitely working through a lot of really hard, scary things, but its also saying we’re not going to put up with this. What can we do?”In an effort to raise awareness and support research, the family launched the ‘Will to Cure ALD’ foundation. Their son is also the grandson of Albuquerque City Councilor Renee Grout, who, alongside her family, was determined to take action in the face of this heartbreaking news.”We want to help other families,” Grout said. “There are a lot of kids out there that have fallen ill. And sadly, it’s too late for them to get better. But the more awareness we can bring to this disease, the more opportunities for healing.”Their goal is to raise $3 million to fund research grants at some of the nations leading research hospitals and universities. These funds will help accelerate progress in understanding and developing treatments for ALD, as well as potentially finding a cure.The disease affects boys more commonly, with symptoms often starting in early childhood. Diagnosing ALD is notoriously difficult because its symptoms are similar to those of other neurological disorders, and many children do not receive a diagnosis until irreversible damage has been done. For the Hall family, their sons condition was diagnosed early, which allowed for timely intervention and care. “So that’s exactly what it’s given us. It’s given us time to build a team for William specifically so that he has every chance of getting the treatment that he needs when the need shows up,” Grout said. “But in the meantime, we’re going to bring awareness to this disease, and do our darndest to fundraise. And this is for research. It’s not for William. This is for the doctors and for the families to give them hope and learn.”Many children with ALD go undiagnosed for years, which significantly reduces their chances of survival and recovery. This reality has motivated the Hall family to not only raise money for research but also to increase awareness about the disease. As of Jan. 1, 2023, New Mexico has made it mandatory to screen all newborns for ALD. This early detection is crucial because it allows for timely intervention, giving children the best chance for treatment and improving long-term outcomes.Through their foundation, the Hall family has made it their mission to not only support scientific advancements but also to bring much-needed attention to ALD, a disease that has long been underrecognized and underfunded. You can donate to the cause here.