Family Support and Awareness

FEB 7TH IS PACS1 AWARENESS DAY is a global center of education, support, and collaborative research for children and their families living with PACS1 Syndrome.

PACS1 Smiles was started by parents whose children have been diagnosed with PACS1, who wish to increase awareness of PACS1 syndrome; offer newly diagnosed families support; promote awareness of this very rare syndrome; and facilitate collaborative research efforts.

Here are the first things you should know about PACS1:

There is a PACS1 family support group that is very active and supportive. They are willing answer your questions and to share their stories with you. Families are from all over the World. Please contact Kerri Ames at to be added.

The first person in the world with PACS1 was diagnosed in 2010. Three years later, the third person (also the first in the US) was diagnosed. Their parents connected over the internet and started a private Facebook group, expecting more families to be diagnosed over time.

Wow, were they right! As awareness grew, dozens of new families were correctly diagnosed and have found support through this online family, leading to real-world meet-ups and lifelong friendships.

As of early 2018, our community has now grown to a tiny but mighty 80+ families, and so it was time to formalize, organize, and establish a ‘Home’ for PACS1.

The mission of PACS1 Smiles is to serve as a collaborative center of education, support and research for children and their families living with PACS1 Syndrome. For more information go to

The PACS1 Syndrome Research Foundation and PACS1 Smiles collaborates through information sharing.