Ask for a present you really care about this year. Join Cure ALD’s birthday fundraising efforts to support the research and development of new ALD treatments. All money raised will be directly donated to carefully vetted research projects that align with Cure ALD's mission to find a cure or preventive treatment. Take a look at the incredible projects below.

Why now?

X-linked Adrenoleukodystrophy (ALD) affects 1 in 17,000 people. ALD is a rare genetic disorder caused by mutations in the ABCD1 gene, leading to the accumulation of very long chain fatty acids (VLFCAs) that damage the brain, spinal cord, or adrenal glands with varying severity. Young boys face the most devastating form—childhood cerebral ALD—which can be fatal without early intervention. While treatment options exist for some manifestations, there is no cure or preventative treatments. Since there is limited funding for rare disease research, funding for ALD research is heavily reliant on donations. Your donation or fundraising effort is vital to ensuring that research for ALD continues. Find out more about Cure ALD.

Cure ALD Research Network

Your gift, your choice! When you donate, you can direct your dollars to the general ALD research fund (split between both projects) or give to a specific project you're passionate about. We believe you should have a say in the impact you make.

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

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

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 →

Interested in Fundraising?

Follow these steps to set up your own Birthday 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 to small or big. It’s important to think about the level of impact that is attainable within the timeframe you’ve set. Generally $5000 is a realistic target for a birthday 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 skip traditional birthday presents this year and 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.
- Note: To fundraise for a specific project, use one of the project fundraising links below to ensure all funds raised go directly to that project.
  - Project 1: Assessing Nervonic Acid's Potential to Protect Adrenal Function in ALD [link to project fundraising campaign]
  - Project 2: Safer Gene Therapy for ALD [link to project fundraising campaign]
Promote your page - share your page with friends and family via text, email, or social media.
- Use this Email & Text Message Toolkit to view sample messages that you can copy and edit for personal use.
- Use this Social Media Toolkit (via Canva) to create graphics for your posts.

Need help setting up your page or creating graphics? Have a special fundraising idea that requires a custom page? No problem, we're happy to help! Reach out to terry@cureald.org.

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

Cure ALD Birthday Celebrations

By Cure ALD

Cure ALD Birthday Celebrations

Ask for a present you really care about - supporting research to cure ALD.

Birthday Fundraisers - Join the Party!