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What is a Partner Family?

The SPATA Foundation was founded by a SPATA family, for SPATA families. Being a Partner Family is a way for SPATA5 and SPATA5L1 Families to be involved with the efforts of the Foundation.

All SPATA5 and SPATA5L1 families are encouraged to join The SPATA Foundation’s efforts to advocate and cure these diseases. Families affected by these disorders can join us by becoming a Partner Family.

We are our children's biggest advocates. We are their voice. The families of children with SPATA5 or SPATA5L1 disorder are the perfect ones to advocate and drive research. As a Partner Family, you'll have more opportunities and resources to do this.

There is no fee or time commitment with being a SPATA Foundation Partner Family, but we do ask that you sign an agreement, just to ensure we're all on the same page.

Why Become a Partner Family?

Your family’s story deserves to be heard. Becoming a Partner Family allows a way to spread the mission of The SPATA Foundation in honor of your child(ren). We supply Partner Families with informational and custom materials, strategies, and continuous support for sharing your story.

What Happens When I Sign Up?

Signing up to become a Partner Family is the first step in getting more involved with our mission! Here's what happens when you sign up to be Partner Family:

Website Family Feature

Each Partner Family will have a chance to feature their story on The SPATA Foundation website! Our stories are what drive this foundation. Our children have a unique experience in life and their stories deserve to be told.

Click here to check out an example

Emotional Support - Partner Family Group Chat

Although we have very active Facebook groups, Partner Families will have access to a SPATA Partner Family WhatsApp Group Chat. This will allow for constant communication, encouragement, sharing highs and lows, and overall more easily connecting with the ones who get it. Very few people truly understand what you are going through. This allows those who would like a better connection to do so.

Weekly Email Updates

We're doing a lot behind the scenes of The SPATA Foundation. We don't often have large updates weekly and try to only share large updates on Facebook. Partner Families will receive a weekly update about The SPATA Foundation's efforts, no matter how small.

We strive to keep families involved, and this is a great way to do that. While we'd love for everyone to be involved with meetings, emails, and phone calls, it's unfortunately not the most productive way to do things. We will update on important emails, calls, and meetings, and take feedback from Partner Families regarding next steps & plans.

Quarterly Family Meetings

The SPATA Foundation will host a virtual Family Meeting every quarter. We know families live around the world in different time zones, so this may consist of various meetings specific to various areas of the world. We will work to coordinate dates and times that work for as many families as possible.

Spreading Awareness

We create a lot of graphics for social media & tshirts for the SPATA Shop. Each Partner Family will receive a customized Facebook cover image, Social Media Graphic with their child(s) photo and The SPATA Foundation Logo, and a tshirt design in the SPATA Shop for friends & family to purchase (money will benefit The SPATA Foundation). See examples here. Partner families are encourage to spread the mission of The SPATA Foundation.

Click here to check out an example

Fundraising for a Cure

Fundraising is an integral part of a non-profit. The tools we need for research for our children cost a lot of money. All Partner Families are encouraged to play an active roll in fundraising efforts (ie., letters, emails, social media). Each dollar raised is for the greater-good of our children.

SPATA Families

Ready to become a SPATA Partner Family?

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