Will to Cure ALD Launches $1.2M Research Portfolio Across Six Centers

Written By Tyler H

Will to Cure ALD is excited to announce the launch of its initial research portfolio, committing more than $1.2 million to high-priority Adrenoleukodystrophy (ALD) research projects across all six ALD Connect Centers of Excellence.

These centers include the Kennedy Krieger Institute, Massachusetts General Hospital, Stanford University, University of Amsterdam, University of Minnesota, and University of Utah.

This represents one of the largest coordinated philanthropic investments ever directed toward ALD research.

The funding supports 14 projects spanning cerebral ALD prevention, AMN prevention, biomarker discovery, and next-generation therapeutic development, a meaningful step forward for a disease that has historically received limited research investment.

A Different Approach to Rare Disease Funding

When our son William was diagnosed with ALD at birth, we were told there was no cure and that research funding was limited. We quickly learned that while extraordinary researchers are advancing the science of ALD, greater resources and alignment can help promising ideas move forward faster.

Rather than funding a single lab or isolated project, Will to Cure ALD built a coordinated research portfolio across every major ALD research center. Our funding agreements include provisions encouraging collaboration, communication, and coordination across centers.

By bringing all six centers together under one coordinated effort, we hope to help important discoveries move forward sooner for families who are waiting.

What This Funding Supports

The portfolio includes projects focused on:

  • Preventing cerebral ALD before irreversible brain damage occurs, with the goal of reducing the need for transplants

  • Slowing or stopping progression of Adrenomyeloneuropathy (AMN)

  • Identifying biomarkers that aid clinical trials

  • Advancing safer and more effective gene therapy approaches

For families living with ALD, this means more treatment options being developed at the same time, not years apart.

By funding multiple therapeutic pathways simultaneously, our goal is to increase the likelihood that meaningful treatment options emerge within the next decade.

A Commitment to Families

ALD affects children and adults, men and women, and families around the world. For many, the disease means lifelong monitoring, adrenal complications, mobility decline, and the constant uncertainty of brain MRI results.

This funding commitment reflects a simple belief that families deserve urgency.

“This started as a fight for our son,” said Tyler Hall, Co-Founder of Will to Cure ALD. “But it has grown into a commitment to every family facing this disease. We couldn’t imagine looking back one day and wishing we had done more, so we chose to act.”

Looking Ahead

This initial $1.2 million portfolio is a foundation — not a finish line. Will to Cure ALD intends to continue expanding its research efforts, funding milestone-driven projects, and supporting collaboration across institutions to accelerate therapeutic breakthroughs.

As part of this commitment to coordinated progress, Will to Cure ALD will also contribute $100,000 to the ALD Connect Breakthrough Research Fund, supporting their collaborative approach to advancing research across institutions and accelerating progress for families.

We are honored to partner with these talented researchers who have committed their careers to understanding and treating ALD. Their dedication gives families like ours real reason for hope.

Together, we Will cure ALD.

For researchers or families seeking more information, please email us.

Tyler H