ALD Connect

Breakthrough Research Fund

We’re introducing the ALD Connect Breakthrough Research Fund, a new initiative dedicated to investing in the most urgent research priorities.

Our goal: raise $5 million to fund innovative projects that will improve diagnosis, advance treatment options, and bring much-needed clarity to families facing uncertainty.

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Why This Fund Matters

Families living with ALD urgently need meaningful progress. Newborn screening has enabled early diagnosis, but further research and innovation are needed to expand treatment options and improve outcomes.

The Breakthrough Research Fund is designed to close those gaps and accelerate progress where it is needed most.

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Research Priorities Identified by the ALD Community

With your support, we can accelerate discoveries in areas that make the biggest difference for patients and families:

  • Biomarkers → earlier detection of changes, monitoring disease progression, and measuring treatment effectiveness.
  • Risk stratification → predicting which patients will develop symptoms, and when.
  • Cell and gene therapy → making emerging treatments safer and more effective.
  • Access to therapies → repurposing known drugs and developing small molecules with potential to modify disease.
  • Artificial intelligence and machine learning → uncovering patterns to speed up discovery.

These are pathways to better care and hope for families.

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Collaboration at the Core

ALD Connect’s Collaborative Research Network brings together researchers, clinicians, and patient advocates across leading centers worldwide, including:

  • Mass General Brigham
  • University of Minnesota
  • Kennedy Krieger Institute
  • Stanford University
  • University of Utah
  • Amsterdam University Medical Center

By working together, we avoid silos, share knowledge, and move promising science forward faster.

Your support is what makes all of this possible. By donating, you’ll help to:

  • Amplify the patient voice in research.
  • Foster collaboration across leading medical centers.
  • Attract top experts and early-career scientists to tackle unanswered questions.

Every gift, large or small, moves us closer to new answers, safer treatments, and a brighter future for people living with ALD.

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“As more families receive a life-altering ALD diagnosis, the demand for better diagnostics, safer treatments, and long-term solutions has never been greater. We’re leveraging the collective experience of our researchers, clinicians, and patient advocates to address this urgent need.”
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Kelly Miettunen
Executive Director, ALD Connect

A Strong Foundation to Build On

In 2024, ALD Connect was awarded a prestigious Chan Zuckerberg Initiative Rare As One grant to launch our Collaborative Research Network. The Breakthrough Research Fund builds on this foundation — providing the long-term resources needed to act on the priorities our community has identified.

This is our first public call for support — and your chance to be part of something that will shape the future of ALD research.

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Useful Links

Clinical Trials
Clinical Trials
The Grey Zone
The Grey Zone
Emerging Investigators
Emerging Investigators