16p Genetic Syndrome Foundation

Please forgive us as our website is still under construction

Advancing Knowledge and Support for 16p11.2 Deletion Syndrome

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Providing support, promoting research, and championing hope for those affected by 16p11.2 deletion syndrome.

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Areas to Focus

We’ve organized the potential areas of concern into the following categories:


What kind of medical care will my child need?


What educational support will my child need?


How to support my child in our home?


How to care for the caregiver to best serve my child?

What you will find on this website

An overwhelming amount of information. Take your time with it. We will start with the basics of DNA and Genetics; what potential associations we know of with 16p11.2 deletion syndrome; what possible therapies exist; what research exists with digestible explanations; tips and tools for a successful education career; what you can do in the home to help your child thrive; community building and individualized support for the caregivers; and celebrating the variation among all of us.

Dr. Nika Akid

Mother, Doctor and Founder
Dr. Nika Akid is an internal medicine doctor in primary care. Her favorite part of practicing medicine is to teach her patients about what is happening to them to empower them. When her son was diagnosed with 16p11.2 deletion syndrome at the age of 3, she found very little information and guidance to help her own family. After years of research and trial and error, she has had amazing results with her son. She has now dedicated her career to helping other families who are looking for answers.

Dr. Wendy Chung

Geneticist and Medical Director
Dr. Wendy Chung is chief of the Department of Pediatrics, Professor at Harvard Medical School, and President of the Children’s Hospital Pediatric Associates. She is also the leading expert on the topic of 16p11.2 deletion amongst many other rare genetic disorders both in research and practice. She is incredibly forward thinking and an advocate for this patient population and their families.

Caroline Pereira

Fundraiser and Director of Finance
Ms. Caroline Pereira is the associate vice chancellor for UCI Health Advancement. In addition to being a seasoned fundraiser in the field of academia and health care, she is a fierce advocate for patient care. She helps create communities that support to uplift one another with generosity and integrity.

coming soon