16p Genetic Syndrome Foundation

Let's Talk Genes and Variation

A good place to start

Fun and
Informational Books

We have created The Curious Kid Series! to help anyone understand the concept of genes and DNA and how they affect us. It is authored by a medical professional and mother to a child with 16p11.2 deletion and illustrated by an engineer and artist as well as a mother to a child with 16p11.2 deletion. It is a labor of love created by the collaboration of an Iranian doctor in California and a Brazilian engineer in Germany who have never met in person but brought together through the Simons Searchlight Foundation for their own children shared with you to aid in your journey. The books are available on Amazon and all proceeds go to fund the 16p Genetic Foundation who created this website.

we use universally known analogies and beautiful imagery to explain what DNA and genes are and how they instruct our body within the context of a conversation between a child and his mother.

what are my genes?

we continue the conversation between mother and child to explore what mutations and variations are and the necessary and natural process of variation in nature and our lives.

What is variation?

we explore the psychosocial impact of a genetic diagnosis on the family structure. This book is told from the point of view of the older sibling and aims to also describe the specific possible associations with 16p11.2 deletion and some possible treatments. Book 3 anticipated to be available for purchase in early 2024.

Just Breathe!

Genetics Broken Down

If you, your child or someone you know has been diagnosed with 16p11.2 deletion, it may feel overwhelming or unclear. That’s how it felt for my husband and I when our 3 year old son was diagnosed in 2014. We created this website and foundation to support you in your journey and provide for you everything we wish we had. There is a lot of information on this website. We have purposefully tried to make the website calm and the information easy to digest.

What is Deletion?

To provide up to date, practical and digestible information and guidance for families to promote children and individuals with 16p11.2 deletion to reach their full potential while celebrating the joys of individual variation.