#USA #Dallas #Will to Cure ALD #ALD Disease #Genetic Disorder

Hall Family Launches Fund for ALD Research

In a poignant response to their infant son's diagnosis of X-Linked Adrenoleukodystrophy (ALD), the Hall family is embarking on a mission to fuel innovative medical research. They have launched the 'Will to Cure ALD' fund at The Dallas Foundation, with aims to substantially advance the understanding and treatment of this rare genetic disorder.

Fundraising Goals and Initial Contributions

The Hall family has set an ambitious target of raising $3 million to support research projects aimed at enhancing diagnostic techniques, developing new treatments, and offering hope to families grappling with the implications of ALD. The family kickstarted this initiative with an initial donation of $1 million, a significant contribution that they hope will spark further donations from the community and beyond.

Understanding ALD

X-Linked Adrenoleukodystrophy is a genetic condition affecting approximately 1 in 17,000 births worldwide. The disorder obstructs the body's ability to break down very long chain fatty acids, resulting in the degeneration of myelin—the protective sheath around nerve fibers in the brain and spinal cord. Without early intervention, which is critical for managing the disease, ALD can lead to severe cognitive impairments, loss of mobility, and in extreme cases, can be fatal.

Reflecting on their journey, Tyler Hall, the father of the diagnosed child, expressed the urgency of the situation, stating, “We didn’t want to look back one day and wish we had done more.” This sentiment speaks volumes about the motivation behind their fundraising efforts which are not only focused on their own child's health but also on the broader ALD community.

The Need for More Research Funding

Historically, ALD has struggled to gain traction in terms of research funding and awareness, often overshadowed by more widely misunderstood diseases. However, the Hall family highlights that the cause of ALD is known—the malfunctioning ABCD1 gene—allowing for targeted research efforts to repair the gene and mitigate disease progression.

Joey Hall, William’s grandfather, voiced his concern over the previous lack of financial support for vital research. “It was shocking to see how little funding was available to the researchers and physicians who are doing essential work,” he remarked, emphasizing the family’s commitment to generating financial resources to change this reality.

Focus on Gene Therapy

One focal point of the fund's endeavors will be gene therapy, which has shown promising results since ALD was one of the initial conditions to benefit from FDA-approved gene therapies. As pediatricians often see the first symptoms of cerebral ALD manifest around the age of three, there exists a limited window for effective intervention post-diagnosis. This highlights the critical need for advancing research, as more families will require support and treatment options as screening becomes more prevalent.

Initial Research Partners

The Will to Cure ALD fund will offer grants to leading research institutions, with early collaboration planned between Massachusetts General Hospital and the University of Utah. As the fund mobilizes, it hopes to expedite the development of novel treatment avenues over the next five to ten years. This partnership not only emphasizes the Hall family's commitment but also aims at positioning ALD-related research on the map in the field of rare genetic disorders.

To learn more about the 'Will to Cure ALD' initiative or to donate, interested individuals can visit willtocureald.org or dallasfoundation.org, contributing to a cause that is pivotal in the fight against ALD.

Conclusion

Through their personal journey of navigating this diagnosis, the Hall family is not only advocating for their son William but also creating a beacon of hope for all affected by ALD. Their commitment to pushing the envelope in research and treatment options is indicative of the power of community support and the relentless pursuit of a cure. As they rally resources and awareness around ALD, they invite the public to join them in ensuring a future where the phrase “we could have done more” never needs to be uttered again.