Our Finances
Acknowledging Our Volunteers – The Gift of Time
The 16p11.2 Genetic Foundation is powered by volunteers’ unpaid time.
Parents, caregivers, clinicians, researchers, advocates, and community members generously donate their time, expertise, and energy to support our mission.
Community Impact
| Contribution Type | Hours | Estimated Value |
| 10 Parent Volunteer Leaders | 8,030 | $290,000 |
| Founder Clinical Service | 9,360 | $1,171,200 |
| Total Community Contribution | 17,390 | $1,461,200 |
Parent Volunteer Leadership
~10 parent volunteer leaders
8,030 hours contributed in 7 months
Estimated value: $290,000
From welcoming newly diagnosed families to supporting educational programs, advocacy efforts, fundraising initiatives, events, and community projects, our volunteers help make everything we do possible.
Founder Contribution – Clinical Service
As both a physician and parent of a child with 16p11.2 deletion syndrome, Dr. Faranak Herrera has contributed 9,360 volunteer hours over 3.5 years to support the Foundation’s work in research, education, advocacy, clinical initiatives, and organizational development.
Estimated donated professional value: $1,171,200
This contribution reflects the Foundation’s commitment to leading by example and investing directly in the community it serves.
Major Donors
| Donor | Contribution |
| Farjamrad Herrera Family | $58,000 |
| The Goldberg Family | $40,000 |
| Azam and Nemat Abdollahi Family Fund | $23,000 |
| The Rogers Family | $15,000 |
Every contribution helps move our mission forward and brings us closer to a future where individuals with 16p11.2 genetic variants have access to better care, stronger support systems, and greater opportunities.
To each of our donors, thank you for helping build a better future for the 16p11.2 community.
We Are Building With Families
“We are not building around families. We are building with them.”
Every support group, educational resource, research initiative, advocacy effort, and community program exists because people chose to contribute what they could.
To every donor, volunteer, clinician, researcher, advocate, and family member:
Thank you for helping build a better future for individuals and families affected by 16p11.2 genetic variants.
Community Investment at a Glance
| Investment Type | Value |
| 3 Major Family Donors | $136,000 |
| 10 Parent Volunteer Leaders | $290,000 |
| 1 Founder Clinical Service | $1,171,200 |
| Total Community Investment | $1,597,200 |
A community built by families. A future built together.
Commitment To Transparency
At the 16p11.2 Genetic Foundation, transparency is a core principle of how we operate. We believe our community and supporters deserve clear insight into how resources are managed and how contributions advance our mission.
To uphold this standard, we make all relevant financial information available here on our Finances page, including annual reports, IRS filings, and other key documents. These materials provide a detailed view of how donations are allocated to support research, advocacy, practical resources, and programs that directly benefit individuals and families affected by 16p11.2.
Our commitment is simple:
Every dollar entrusted to us is used responsibly, ethically, and in direct alignment with our mission.
Our Non-Profit Status
The 16p11.2 Genetic Foundation is a not-for-profit corporation recognized by the IRS as a 501(c)(3) tax‑exempt organization.
All U.S. contributions are tax‑deductible to the fullest extent allowed by law. Tax ID: 88-3066433
Give with Confidence Our Candid Gold Seal of Transparency
When you choose to support the 16p11.2 Genetic Foundation, you deserve to know that your generosity is handled with care and integrity. That’s why we maintain a Candid Gold Seal of Transparency—a recognition that shows we openly share detailed information about our mission, leadership, finances, and impact.
The Gold Seal helps donors clearly understand:
- How funds are used to support programs, families, and research
- Who leads and guides the organization, including governance and oversight
- What goals we are working toward and how we measure progress
- What impact your gift makes in the lives of those affected by 16p11.2
By earning this seal, we provide you with the clarity and visibility you need to make informed giving decisions. It reflects our commitment to accountability—and our belief that trust is the foundation of every donation we receive.
When you donate, you’re supporting a mission grounded in transparency, responsibility, and meaningful impact.
Your trust matters. Your support changes lives. Thank you for giving with confidence.