A smiling family of four, including a mother holding a sleeping newborn wrapped in a blue blanket, a father, and a young child wearing a white dress. The background shows a nursery with subtle decor.

Our ALD Story

This photo captures the joy of bringing a newborn home. What it doesn’t show is that days earlier, we received a call that our son, William, had flagged for a rare genetic disease called Adrenoleukodystrophy (ALD).

A quick search tells you it can be fatal. In an instant, the excitement of welcoming our baby boy was replaced with fear, confusion, and questions we never imagined asking. Instead of settling into life as a family of four, we found ourselves in doctors’ offices, learning new medical terms and trying to understand what the future might hold. Soon after, William’s mom, Taylor, was also diagnosed with ALD.

ALD prevents the body from breaking down Very Long Chain Fatty Acids (VLCFAs), leading to adrenal failure, spinal cord disease, and in approximately 35% of boys, a rapidly progressive cerebral form that is fatal without a bone marrow transplant. For William, this means brain MRIs every six months throughout childhood and lifelong monitoring, living with uncertainty and hoping each scan comes back clear.

When we were told there was no cure and that research funding was limited, we knew we couldn’t imagine looking back one day and wishing we had done more, so we decided to do our part to help change that.

In late 2024, we launched Will to Cure ALD to accelerate therapeutic research on ALD. Since then, we have raised more than $2 million and partnered with leading research institutions to fund high-potential, translational science aimed at moving us closer to a cure. We decided to take a unique approach by supporting a portfolio of projects and collaborating with all centers. In the fall of 2025, we funded 14 projects across all six ALD Connect Centers of Excellence, addressing every major form of the disease and supporting research in both men and women patients. We established agreements with all centers that include a commitment to collaborate and move us closer to a cure.

While this started as a journey for William, we are now more determined than ever to fight for all ALD patients and families. We truly believe that urgency, bold funding, and collaboration can change the trajectory of this disease and we appreciate any support you can provide. Together we Will cure ALD.

Tyler, Taylor, Emma, and William.