June of 2018 was the first ever Lamb-Shaffer Syndrome Awareness Month. 


The Lamb-Shaffer Syndrome Movement 

The timeline of the social aspect of Lamb-Shaffer Syndrome

Lamb-Shaffer Syndrome is classified as a mutation, deletion or partial deletion of the SOX5 gene located in the 12th chromosome. The most common symptoms of Lamb-Shaffer Syndrome are, but not limited to, significant speech delay, hypotonia, gross motor delay, fine motor delay, global developmental delay and vision issues. There are currently less than 550 people in the world diagnosed with this syndrome, we know there are more. Diagnosis of LSS can only be made with the full exome sequencing genetic test. Currently, there is no way to clinically diagnose. If you think you might know someone with Lamb-Shaffer Syndrome, please find us on Facebook or e-mail us. The Lamb-Shaffer Syndrome Organization was created to raise money to continue research of the SOX5 gene and Lamb-Shaffer Syndrome. 

In June of 2018, parents of the Lamb-Shaffer Syndrome community decided to have our first ever Lamb-Shaffer Syndrome Awareness month. This will be an annual campaign to raise awareness about our syndrome, raise money for research, and put a spotlight on our amazing community. 


Make sure you LIKE us on Facebook! 

Please watch our video showing the power of our parents. We wouldn't be anywhere without the resiliency of our parents. Learn more about them in our video. 

Lamb-Shaffer Syndrome 



On October 7, 2017 8 families from all over the world came together in Baltimore, MD to meet for the first time. Please watch our video to see our kids and watch a group of strangers who turned into a family because of a common gene. 

newly diagnosed

Has your loved one recently been diagnosed with Lamb-Shaffer Syndrome? Please click the link below to learn more about our community, where you can find us, and what we are up to. You are not alone and you are now apart of a community of individuals just like you. Welcome!

We are constantly raising awareness for Lamb-Shaffer Syndrome. JUNE is LSS awareness month. Please follow us on Instagram and Facebook to follow along and share our posts. Please click the link below to learn how you can get involved. 

It is so easy to see past the hard work that has been put in by so many people to create what you see right now. Please watch this video to learn how we came to be where we are now. We are forever grateful for those who have come before us to be where we are now which is so far ahead of where we used to be!

Click on the link below to find all research articles about the SOX5 gene and Lamb-Shaffer Syndrome. Articles will be added as they are published. 


2017 lamb-shaffer syndrome meet up



2022 Lamb-Shaffer Syndrome Awareness Month Videos