Hello to all of you, our newly diagnosed families. We are so happy you are here, that you have found us, and that you can now join our efforts to find a treatment or a cure for Jordan’s Syndrome. Together we truly can change the world.

Let’s start by saying that you may be feeling overwhelmed, anxious, even a bit sad or confused right now and that’s ok. Know that this post is here for you. If you want to wait to read it, that’s ok…. It will be here when you’re ready and so will we.

That said, if you’ve continued reading, great! Please know that you are not alone anymore. There are more than 200 families in 35 countries around the world that are here to support you, trade stories and experiences with, ask questions to and gain hope and understanding from. We are here for you. The Jordan’s Guardian Angels team is here for you, and our team of brilliant researchers are here for all of us as they work diligently and tirelessly for a treatment or a cure for Jordan’s Syndrome. We are closer than ever to that goal.

We recently published a podcast on 11/29/21 that goes through every aspect of being a newly diagnosed Jordan’s Syndrome family.

Some of the topics include:

-What is Jordan’s Guardian Angels?
-How to take advantage of our online community
-How to join our informal database
-Background on the research
-What is Simons Search Light? And how to you provide EEGs and MRIs to Seattle Children’s?
-How do you help spread awareness?
-How can I get involved and support the effort?
-What is the medical kit and what do I do with it?
-What social media does JGA utilize?
-Where can I listen to the podcast?
-What resources are available and how can I easily find them?
-Where do I go when I have more questions?

PLEASE, take a moment and listen or watch. We know that it will be worthwhile.

Here’s how to connect:

We are a small part of your family now and you are a big part of ours. If you have any questions or concerns, please feel free to email us at, find us and connect on Facebook, and let’s travel this road together.


November 30, 2021