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Heterotaxy Connection

PO Box 585

Draper, Utah

84020

 

© 2018-2019 Heterotaxy Connection, a 501(c)(3) nonprofit. All rights reserved.

HETEROTAXY AWARENESS DAY 2018

Every year on May 4th we celebrate Heterotaxy Awareness Day as a community. Since heterotaxy remains a relatively unknown syndrome, we are committed to raising awareness about these rare warriors, and we invite you to join us. We have lots of ways to spread the word about heterotaxy; if you have ideas that aren't here, get in touch with us and let us know so we can add them to the list!

This year, our theme is "Putting the Pieces Together." Since heterotaxy is such a complex syndrome and our heterotaxy heroes fall across a very wide spectrum, we've all had moments where we've felt like we were handed an incredibly complex puzzle without any picture on the box to tell us where to start. The primary goal of our organization is to provide that picture, to give our families a way to find the first steps on their journey forward and to walk alongside them on that road for as long as they need us.

Get Involved!

Looking for ways to help us raise awareness? Look no further!

One of the easiest ways to get the word out is through social media. Post to Twitter, Instagram, or Facebook using our hashtag: #HAD2018. Search for the hashtag and share some posts from other heterotaxy families in order to increase their exposure.

We're looking to feature our fans and family this Heterotaxy Awareness Day. Please consider submitting a 30-60 second video telling us what Heterotaxy Awareness Day means to you. 

It's easy to get started. Just record a short clip and email it to necia@heterotaxyconnection.org. We're excited to see what you have to say!

Want an easy way to help us raise awareness and also raise funds to help us continue our work here at Heterotaxy Connection at the same time? Sign up for the Heterotaxy Connection AnyWay 5K! You can run, walk, roll, somersault, or bike your way to 5K; get creative. You can complete it any way you like. Sign up with a team of five or more and qualify for a group discount, so tell your friends! All the information you need can be found here.

Plan a get together! If you live close enough to any other heterotaxy families, you could plan a day at a zoo or a playdate at a park. Don't have any other heterotaxy families in your area? That doesn't need to stop you; you can also plan events for your local community to help raise awareness. Throw a picnic with teal and yellow napkins and play "pin the organ on the cardboard cutout." Combine your AnyWay5K with a get together, and plan a hike with local families. The possibilities are endless, so be creative, and don't forget to share pictures with the #HAD2018 hashtag so we can be a part of the fun, too.

What better way to celebrate Awareness Day for a syndrome marked by random organ placement than with random acts of kindness? We've put together a little pdf with some cards you can print out and share while you spread both love and awareness to those around you. Just click on the image to the left to download the file!