The Hall Family Launches "Will to Cure ALD" Fund to Support Medical Research into X-Linked Adrenoleukodystrophy

Inspired by their 9-month old son William, who was diagnosed with ALD after a newborn screening, the Hall family seeks to jumpstart research into the rare disease, in partnership with The Dallas Foundation.

DALLAS, Jan. 7, 2025 /PRNewswire/ -- The Hall family has established the "Will to Cure ALD" fund at The Dallas Foundation to support cutting-edge medical research through grants aimed at improving diagnostic and predictive models, advancing new treatments to market, and offering hope to families affected by X-Linked Adrenoleukodystrophy (ALD), all in pursuit of a cure for their loved ones.

The fund seeks to raise $3 million to begin funding research grants immediately. The Hall family has donated the first $1 million in seed funding which is a significant step in funding critical research and continuing to build on the work of organizations like ALD Connect and all those committed to a cure, effective treatments and patient advocacy. 

ALD is a genetic condition, impacting 1-in-17,000 births, that affects children and adults from all backgrounds, ethnicities, and across the world. ALD prevents the body from breaking down very long chain fatty acids (VLCFAs) which causes damage to the myelin sheath, the membrane that surrounds nerve fibers in the brain and spinal cord.  Early intervention and regular screenings are critical to identifying and addressing the specific manifestations of ALD to slow the progression of the disease, which can severely impair cognition, mobility and untreated, can be fatal.

"We are fortunate to be in Texas, a state that began screening all newborns for ALD in 2019. The diagnosis alone was staggering, but we're also faced with not knowing how or when the disease will manifest," said Tyler Hall, William's father. "My wife and I knew immediately that we wanted to do something not just for our son, but for all of the other families now facing the uncertainty of ALD. We didn't want to look back one day and wish we had done more."

Because ALD is classified as a rare disease and has been difficult to diagnose, it has frequently been overlooked and not received the level of federal or philanthropic funding of more commonly known diseases. However, unlike many diseases, the cause of ALD–a malfunctioning ABCD1 gene–has already been identified, allowing researchers to focus efforts on repairing this gene and finding ways to slow the progression of disease. With this fund, the Hall Family seeks to empower and support those who have dedicated their lives to curing rare diseases like ALD. 

"In so many ways our family is blessed–we have access to the best physicians in the country and an incredible support system that has rallied around us and inspired us," said Joey Hall, William's grandfather. "Frankly, I was shocked to see how little funding was available to the researchers and physicians who are doing the essential work of identifying biomarkers and developing new therapies that can provide treatments and even cures for children and adults with ALD. This is why we are so committed to raising the necessary funds, so this disease can be cured, once and for all."

Gene therapy is one key area of focus for researchers and ALD was one of the first diseases to benefit from FDA-approved gene therapy, building a foundation for additional treatment options. Because cerebral ALD often does not begin to affect children until the age of three, there is a crucial window between diagnosis and onset where physicians can intervene to avoid the worst outcomes. As newborn ALD screenings become more common, the number of impacted families will continue to grow.

Grants from the Will to Cure ALD fund will enable researchers to develop better models and run more trials to accelerate progress. Hosted by The Dallas Foundation, the fund will provide grants to top research hospitals and universities, initially supporting Massachusetts General Hospital and the University of Utah, with the goal of increasing treatment options in the next five to 10 years.

To learn more about Will to Cure ALD and progress toward the $3M funding goal, visit willtocureald.org or dallasfoundation.org/willtocureald to donate.

About the Will to Cure ALD Fund

X-Linked Adrenoleukodystrophy (ALD) is a rare genetic disorder that breaks down myelin, the protective sheath that surrounds the brain and spinal cord. Early intervention and regular screenings are critical to identifying and addressing the specific manifestations of ALD to slow the progression of disease.

In partnership with The Dallas Foundation, the Hall family has established the Will to Cure ALD Fund, inspired by William, who was diagnosed with ALD after a newborn screening. Tax deductible donations to the fund support cutting-edge medical research to improve diagnostic and predictive models, identify and bring to market new treatments, and provide hope to families affected by ALD that a cure can be found for their loved ones. To learn more, visit willtocureald.org.

SOURCE Will to Cure ALD