Help Us Fundraise
How to Fundraise
With scarce funding to support the research and development of new ALD treatments, Cure ALD fundraising efforts have the greatest potential to make a difference. The money raised will be directly donated to carefully vetted research projects that align with Cure ALD's mission to find a cure or preventative treatment. We are in the process of reviewing research applications now and will announce the selected projects in Q1.
Birthday Fundraiser
Ask for a present you really care about - supporting research to cure ALD.
Adding your own page to the 2026 Birthday Fundraiser page is simple, but before getting started, here are a few topics to make the experience even more seamless:
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Profile Picture - have a photo of yourself ready to upload to the page.
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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 $5,000 is a realistic target for a birthday fundraiser.
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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.
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Create Your Page - Go to the 2026 Birthday Fundraiser page, where all current Team Members of this fundraiser are listed. Select the “+Fundraise” button to the right of this section to register as a fundraiser and get your own page started using the information from #1-3.
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Promote Your Fundraising Page - Share your custom fundraising link via text, email, or social media. Use the toolkit below to create graphics for social media.
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Once your unique birthday fundraising page is set, you’re ready to start fundraising. The following materials will help you promote your fundraiser. If you're not familiar with how to use Canva or need support with graphics, please email info@cureald.org.
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Content - Be sure your post explains why you're fundraising and how the money helps support ALD research. When possible, make it emotional and relatable. Use strong visuals (photos or short videos) to capture attention. Keep posts brief and to the point, while keeping your ask of “Donate” highlighted.
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Engagement
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Consider developing a unique hashtag for your fundraiser.
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Share updates frequently (at least weekly), don't post too often without new content.
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Celebrate hitting goals (e.g., "Halfway there!") to motivate more giving.
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Show appreciation by thanking supporters by name in posts to make them feel valued.
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Reach - Ask friends, family, and supporters to share your posts or create their own about the fundraiser. When applicable, share in relevant local Facebook groups, or community chats.
Once you have added your page to the 2026 Birthday Fundraiser page and you have started raising funds, your page will be highlighted on the Cure ALD homepage. The progress made towards the research project will be recognized.
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Rare Disease Awareness Month Fundraiser
Rare disease funding is limited. Your donation to Cure ALD can help advance research towards a cure.
Rare Disease Day is February 28th. Help Cure ALD spread the word!
As we countdown towards Rare Disease Day, it’s helpful to understand what a rare disease is.
Per Rare Disease Day:
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A disease is rare when it affects fewer than 1 in 2,000 people.
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70% of rare diseases start in childhood.
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72% of rare diseases are genetic.
As a rare disease, X-linked Adrenoleukodystrophy (ALD) affects 1 in 17,000 people, impacting 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. Research progress toward curative or preventative treatments remains frustratingly slow, hampered by limited funding for rare disease research.
Make a donation to support Cure ALD's efforts to find a cure or new preventative treatment for those impacted by ALD. Cure ALD is currently reviewing research applications and will announce the selected projects in Q1.
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The following materials will help you raise ALD awareness during Rare Disease Month:
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Content - Be sure your post explains “What is ALD?” Use strong visuals (photos or short videos) to capture attention and keep posts brief and to the point.
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Engagement - Share updates frequently (at least weekly), don't post too often without new content.
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Reach - Ask friends, family, and supporters to share your posts or create their own about the fundraiser. When applicable, share in relevant local Facebook groups, or community chats.
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Important Information About Cure ALD
Cure ALD exclusively funds research aimed at curing ALD or preventing any symptom onset, and by empowering families as active contributors to the cause through both fundraising and direct action that advances treatment possibilities.
The inspiration for Cure ALD comes from the Wiener family, who in 2024, discovered that their three-year-old son had ALD after the mother took a genetic carrier screening test during a subsequent pregnancy. Confronting this devastating diagnosis, they quickly realized two critical gaps: (1) insufficient funding directed toward research focused on curing ALD or preventing symptom onset; and (2) a lack of resources to help newly diagnosed families take meaningful action in the fight against this disease.
Cure ALD is a 501(c)(3) non-profit organization.