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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. Learn more about these projects.

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You get to choose how to fundraise - whether you're celebrating a birthday or another special event. You can also choose to fundraise for a specific project that resonates with you. Cure ALD believes in giving you the autonomy to give the way you want to give.

Rare Disease 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:

    • A disease is rare when it affects fewer than 1 in 2,000 people.

    • 70% of rare diseases start in childhood.

    • 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.

     

    Add your own page to the 2026 Rare Disease Day Fundraiser 

    Before getting started, here are a few topics to make the experience even more seamless:​

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    1. Profile Picture - have a photo of yourself ready to upload to the page.

    2. 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 fundraiser.

    3. 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.

    4. Create Your Page - Go to the Rare Disease Day Fundraising 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.

    5. Promote Your Fundraising Page - Share your custom fundraising link via text, email, or social media. Use the toolkits below to create messages and customize graphics for social media.

  • The following materials will help you raise awareness about ALD and Rare Disease Day:

    1. 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.

    2. Engagement

      1. ​Consider developing a unique hashtag for your fundraiser.

      2. Share updates frequently (at least weekly), don't post too often without new content.

      3. Celebrate hitting goals (e.g., "Halfway there!") to motivate more giving.

      4. Show appreciation by thanking supporters by name in posts to make them feel valued.

    3. 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 Rare Disease Day 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.

Fundraise for an ALD Research Project

Select the ALD research project that deeply resonates with you and rally your community around it.

  • Adding your own page to the Project Fundraiser page is simple, but before getting started, here are a few topics to make the experience even more seamless:​

    1. Profile Picture - have a photo of yourself ready to upload to the page.

    2. 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 $3,000-$5,000 is a realistic target for a fundraiser.

    3. 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 ALD research.

    4. Create Your Page - Go to the desired project fundraising page where all current Fundraisers are listed. Select the “+Create a Page” button to the right of this section to register as a fundraiser and get your own page started using the information from #1-3.

    5. Promote Your Fundraising Page - Share your custom fundraising link via text, email, or social media. Use the toolkits below to help get you started.

  • Once your unique 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.

    1. 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.

    2. Engagement

      1. Consider developing a unique hashtag for your fundraiser.

      2. Share updates frequently (at least weekly), don't post too often without new content.

      3. Celebrate hitting goals (e.g., "Halfway there!") to motivate more giving.

      4. Show appreciation by thanking supporters by name in posts to make them feel valued.

    3. 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 created your fundraising 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.

Fundraise on Your Birthday

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:​

    1. Profile Picture - have a photo of yourself ready to upload to the page.

    2. 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.

    3. 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.

    4. 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.

    5. 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.

  • 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.

    1. 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.

    2. Engagement

      1. Consider developing a unique hashtag for your fundraiser.

      2. Share updates frequently (at least weekly), don't post too often without new content.

      3. Celebrate hitting goals (e.g., "Halfway there!") to motivate more giving.

      4. Show appreciation by thanking supporters by name in posts to make them feel valued.

    3. 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.

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.

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