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Our Story

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Our Founder

When Dr. Faranak Herrera received her son’s 16p11.2 diagnosis at just three years old, she quickly discovered what so many families face: there were no established medical treatments, no clear guidance, and very few resources for parents searching for answers. Instead of accepting that gap, she chose to change it.

Driven by her love for her son and her commitment to the wider community, she founded the 16p11.2 Genetic Foundation, an official 501(c)(3), to push for research, raise awareness, and build the support network she wished had existed when their journey began. In its early years, she personally sustained the organization through significant personal investment and countless physician hours. Today, her leadership continues to fuel a movement focused on understanding, advocacy, proper care, and hope for every family affected by 16p11.2 differences.

Dr. Faranak Herrera posing in a medow with her husband and two children

Learn more about our founder in this 2025 feature by Simons Searchlight.

Leading the Way: An Interview with Franki Herrera

Our Vision

We envision a world where families are supported with evidenced-based guidance, robust research has led to meaningful treatments, and patients with 16p11.2 genetic variants have hope for long-term wellness.

Our Mission

The mission of the 16p11.2 Genetic Foundation is to treat and integrate 16p11.2 genetic variants seamlessly throughout the health, education and societal landscapes by 2030. We do it for our children.

The Four Pillars of the 16p11.2 Genetic Foundation

Convene/Connect Foster millions affected by 16p11.2 variants to come together for education, support and care regularly.

Advance Research Connect patients with research from basic science to clinical trials of effective medications and multi-gene therapy. Conduct our own research.

Drive Better Care Create the 16p CARE Program: Clinical Advancement, Research, and Education that will not only develop and implement clinical care practices, but also serve to train other physicians.

Advocate for Policy Designated ICD code. Work with policy makers and industry to promote education and understanding of 16p11.2 variants to ease the acquisition of proper care and education for those affected.

What We’ve Been Up To

Clinical Care Guidelines in Primary Care for 16p11.2 Deletion

Read the Guidelines

Publication of the  Curious Kid Series!   to  help our children learn about 16p11.2 genetic variants. 

What Are My Genes?
Book 1 in the Curious Kid Series breaks down the science to teach children about DNA and genes through kid-friendly examples and easy to understand analogies.

What is Variation?
Book 2 in the Curious Kid Series continues the conversation, helping children see that variations and differences are something to celebrate.

Just Breathe!
This book shares the emotional journey of families after a rare genetic diagnosis while highlighting the strength found in being different.

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16p11.2 Deletion Conference 2025

The foundation held its inaugural conference last fall in Anaheim, CA, connecting families with expert scientists and providers. 

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Organizing the backbone of our Foundation

A group of parent-leader volunteers has come together to serve in director-level roles, engage in strategic planning, program development, project management, and establish strong financial and risk management strategies—alongside intentional community-building efforts.

In addition to a focus on 16p11.2 deletion, there is formal development of the 16p11.2 duplication chapter. Ongoing efforts continue to coordinate research with universities and pharmaceutical partners to accelerate understanding and treatment option.

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Celebrating 16p11.2 Genetic Variance Day

November 16th is designated as 16p11.2 Genetic Variance Day, and our team coordinated multiple campaigns to spread awareness about this rare condition and raise funds to further advance the care needle for our children.

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Quarterly 16p11.2 Seminar Series

In collaboration with the University of Washington and the University of Iowa IDDRC (Intellectual and Developmental Disabilities Centers)

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Revamp of the Web Site

As our community grew, so did our understanding of how many families are affected across the full 16p11.2 spectrum. What began as 16pdel.org evolved with a conscious decision to be more inclusive of proximal and distal deletions and duplications. Therefore, we chose to adopt a more welcoming, inclusive URL that reflects everyone we serve.

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