Our Story
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.
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 variances have hope for long-term wellness
Our Mission
The mission of the 16p11.2 Genetic Foundation is to treat and integrate 16p11.2 genetic variances 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 variations 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 Center of Excellence clinics 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 variations to ease the acquisition of proper care and education for those affected.
What We’ve Been Up To
