Rare disease funding is limited. Join Cure ALD’s fundraising efforts to support the research and development of new ALD treatments. All money raised will be donated to carefully vetted research projects that align with Cure ALD's mission to find a cure or preventative treatment.

What is ALD?

X-linked Adrenoleukodystrophy (ALD) affects 1 in 10,500 births. ALD is a rare genetic disorder caused by mutations in the ABCD1 gene. These mutations cause very long chain fatty acids (VLCFAs) to build up. The buildup can damage the brain, spinal cord, or adrenal glands, with varying severity. Young boys face the most severe form, cerebral ALD, which can be fatal without early intervention.

While treatment options exist for some forms of ALD, there is no cure and no preventive treatment. Funding for rare disease research is limited, so ALD research relies heavily on donations.

Your donation or fundraising effort helps keep this research moving. Find out more about Cure ALD.

Cure ALD Research Network

Thanks to our community, Cure ALD funded two research projects this year. Your gifts made this work possible. They also show the kind of research we will fund next year. Our focus stays the same: preventing ALD symptoms before they start.

Project 1: Assessing Nervonic Acid's Potential to Protect Adrenal Function in ALD

Cure ALD raised $38,000 for this project in 2026.

Project Lead: Keith Van Haren, MD — Stanford School of Medicine

This study will explore whether nervonic acid, a natural fatty acid, can prevent adrenal failure in a genetic mouse model of ALD. Dr. Kartha’s laboratory at the University of Minnesota has already shown that nervonic acid lowers the harmful fats (VLCFAs) that damage adrenal cells. Now the Van Haren Lab and Kartha Lab will work together to test whether giving nervonic acid to ALD mice can protect their adrenal glands before damage occurs.

The challenge with adrenal failure in ALD has always been that doctors can only treat it after it happens, with lifelong steroid medications. The Van Haren lab will measure whether nervonic acid can lower harmful fat buildup in adrenal tissue, prevent cellular damage, and reduce stress hormones. The intent for this is to help design clinical trials of nervonic acid as the first preventive treatment for adrenal insufficiency in ALD boys. Learn more about this project →

Project 2: Safer Gene Therapy for ALD

Cure ALD raised $50,000 for this project in 2026.

Project Lead: Alex LeNail, PhD — George Church Lab, Wyss Institute at Harvard University

Alex is exploring a new way to treat Adrenoleukodystrophy (ALD) using gene therapy. The goal is to safely deliver a working copy of the ABCD1 gene to the brain and nervous system—the areas most affected by ALD.

The challenge with treating ALD has always been getting therapeutic treatments into the brain, which is protected by something called the blood-brain barrier. He’s testing specially designed delivery vehicles that may be able to cross this barrier more safely and effectively. Learn more about this project →

Next year, we will fund more projects like these. Your gift helps us keep this research moving. Thank you for standing with our family and so many others.

Cure ALD's Global Ambassador

Sydney (Zmrzel) Luke, known to WWE fans as Maxxine Dupri, is proud to serve as Cure ALD’s Global Ambassador. She shares her family’s story to help more people learn about ALD and support the research that can prevent it.

Read more about Zmrzel Family here.

Interested in Fundraising?

Follow these steps to set up your own fundraising page.

Profile picture - have a photo of yourself ready to upload to the page.
Fundraising goal - every dollar has the power to make an impact, so there is no goal too small or big. It’s important to think about the level of impact that is attainable within the timeframe you’ve set. Generally $2,000 is a realistic target for an online fundraiser.
Your story - Cure ALD and ALD in general will likely be new to your audience, so it’s important to explain why you’ve chosen to partner with Cure ALD - to raise funds exclusively aimed at supporting research to cure ALD.
Create your page - select the “+Create a Page” button above in the Fundraisers section to register as a fundraiser and get your own page started using the information from #1-3.
Promote your page - share your page with friends and family via email, text, or social media.

💙Thank you for fundraising with Cure ALD. We are stronger together! #HelpCureALD

November is ALD Awareness Month 💙

We are stronger together