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Fundraise to #CureSDS

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For rare and ultra-rare diseases, not only are patients scarce but so is funding. Research and research infrastructure critically depend on funding from the patient community to jumpstart new projects and fill in gaps left by governmental and other funding sources. Funding also helps us make our voices heard in terms of what kinds of research and therapies we want to prioritize, and to be able to capture and make our voices heard effectively.

Would you like to play an active role in accelerating research for effective treatments and a cure?

Every dollar makes a difference in the fight to find ways to eliminate the leukemia risk and a cure Shwachman-Diamond Syndrome. No matter how you do it, your fundraising is an essential part of this mission. There is no right or wrong way to fundraise. People have done some pretty amazing and creative things to raise money. Big or small, in person or online. Follow these three basic steps:

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        Create and customize your fundraising page


To create your personalized fundraising page as part of our main fundraising campaign of the year, click on the "I want to fundraise for this" button on the main fundraising campaign page. Give your campaign some style and a personal touch. Write a brief explanation and upload a photo of yourself or your family. Choose an end date, set a goal — then publish your page.

        Spread the word

You have your goal — so let’s help you get there. Post on social media or send friends and family a quick email to let them know about your fundraiser. If you’re passionate about #CureSDS by investing in research, chances are they will be too and feel inspired to contribute. You are doing something amazing, and your friends and family will want to help you succeed. Make sure to ask them for support.

        Thank your donors!


The best way to show your appreciation is to tell your donors how their gift has made an impact. Find stories about our work on our blog, social media, or newsletter, and share them with family and friends who contributed.


Holidays: Add a Holiday Appeal to your card
this year!

We will help you create a personalized appeal letter that will speak to your family and friends. You can add it to your annual holiday mailing, or we can print and mail it on your behalf. Contact us at, and we will work with you to make it a easy as possible.

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We can help you create customized flyers, letters, cards, or whatever you need for your fundraising efforts! We can even add a custom QR code that takes users to your own fundraising page, and add a Text-to-Donate code as well.

Holiday Appeal
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When it is safe again, host an In-Person Event

Lemonade stand, golf tournament, fundraising gala at your favorite restaurant, a 5K. The possibilities are endless.

Start an Online Fundraiser, today

Especially since in-person events are not possible right now, the options for online fundraisers have exploded. The most popular method is a peer-to-peer campaign via a Facebook fundraiser or a crowdfunding campaign through our Fundraising platform (GiveLively). For the holidays, use this campaign page and click "I want to fundraise for this" to set up your own customizable fundraising page, then and spread the word! 

Join an existing Online Fundraiser

Check the "Current Fundraisers" section below and join to lend your support. Often, there will be a simple way to create your own fundraising page as part of that campaign. Contact us if you have any questions.

Find a current Facebook fundraiser to join. 

Pledge your Birthday, Wedding, or any Special Event

Make it your most memorable and meaningful birthday yet. Instead of gifts, ask for donations on your birthday. And we make it easy. The options include a Facebook fundraiser (and some tips) or a crowdfunding campaign through our Fundraising platform (through GiveLively).

Current Fundraisers

current fundraisers
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Past Fundraisers

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2020 One Million Steps Closer to CureSDS
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