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The unfortunate truth is, rare diseases are often overlooked when it comes to funding. Research efforts can cost millions, but big pharma and institutions fail to choose disorders with a small patient population to research due to the lack of profit potential.

In the end, funding efforts fall to the families and patient organizations. While it may feel impossible, if we work together, it can be done.

We invite everyone to participate in fundraising for The SPATA Foundation. Whether you raise $50 or $5,000, it's one step closer to a treatment for our children.

ALL efforts are appreciated & welcomed. 


Before creating a fundraiser, we ask that you please request permission before using The SPATA Foundation's name, logo, or materials.

The SPATA Foundation is a 501(c)3 organization in the United States, which means donations to The SPATA Foundation are tax-exempt for US donors. We can provide a tax-receipt to those who make digital donations internationally, but we cannot guarantee any tax-exempt status for International donations.


It's important to spread accurate & consistent information and messaging. We've put together some materials you can use for awareness and fundraising. Feel free to print these on your own. Please remember to request permission above.

Just a reminder: Remember to thank your donors!


We use Zeffy to fundraise which allows you to create your own fundraiser on behalf of The SPATA Foundation. You’ll be able to set a fundraising goal and share your story. Once your page is ready to go, you can easily share it with friends using email, text, or social media!

You won't have to deal with any forms or money since it feeds into the main fundraiser. All donators will receive a tax receipt when they donate via Zeffy.



Getting your local community involved is a great way to Fundraise, Advocate, and Educate all at once! We've put together some ideas, but please feel free to come up with your own as well! There are endless ideas, we encourage you to brainstorm and google and come up with the best fundraiser option for you and your community.

  • Walk/Run/Bike

  • Restaurant Night

  • Raffle and/or Auction

  • Car Wash

  • Bake Sale

  • Wreck it Room

  • Golf Tournament


help us find a cure


The SPATA Foundation is on a mission to find a treatment that will enhance the lives of those affected by SPATA5 and SPATA5L1. 

The science exists, but it takes time and money. 

Your donation gets us one step closer.

SPATA5 Sophia
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