Get Involved
This Foundation began the way many journeys in the rare disease world do: with one parent, one child, and an overwhelming amount of love.
A diagnosis changes everything. Families learn new language, navigate complex systems, and carry questions without clear answers. Love for a child becomes the force that pushes forward, even when the path is difficult or unclear.
But no parent can do this alone.
What our children need and deserve can only be built together: families, clinicians, researchers, advocates, and supporters each contributing what they can. Progress does not require everyone to do everything. It requires many people doing small, meaningful pieces.
We know from our community assessment survey how limited time and energy can be. Many families are already stretched thin. That reality shaped how this Foundation was built.
We created human‑sized, time‑respectful ways to get involved. Volunteer roles are designed as defined projects with clear goals and clear endpoints, allowing people to contribute without open‑ended commitments.
As an organization run entirely by volunteers, we rely on a wide range of skills, including leadership, clinical and scientific expertise, research and data support, legal and governance guidance, operations and administration, communications, technology, fundraising, event planning, and lived‑experience insight.
Some people give financially. Some give time. Some share expertise, connections, or perspective. All forms of support matter.
If you are here because you are a parent, caregiver, professional, or ally, your presence matters. If you believe children with rare genetic conditions deserve coordinated care, clear guidance, and opportunity across the lifespan, you already belong here.
However you choose to engage as a donor, volunteer, fundraiser, or supporter, thank you for being part of this shared effort.
Together, we can treat and integrate 16p11.2 genetic variations seamlessly across the health, education, and societal landscapes by 2030, for our children and families.
Donate
Your donation directly supports family programs, research collaboration, education, and advocacy efforts. The Donate page explains how your contribution helps advance understanding, expand resources, and ensure families have access to the support they need—today and in the future.
Subscribe
Stay connected with the 16p11.2 community. The Subscribe page lets you sign up for updates on new resources, research opportunities, events, and foundation news—delivered straight to your inbox.
Volunteer
Volunteers are at the heart of our work. The Volunteer page shares opportunities to contribute your time, skills, and experience to support families, events, outreach, and advocacy—no matter where you live or how much time you have.
Ways to Give
There’s more than one way to make an impact. The Ways to Give page outlines options such as recurring gifts, memorial or honor donations, employer matching, and planned giving—allowing you to contribute in a way that works best for you.
Fundraising
Turn passion into action. The Fundraising page highlights peer‑to‑peer and community fundraising opportunities, including how to start your own fundraiser to support the Foundation while raising awareness for 16p11.2 genetic variations.
Events
This page lists upcoming events hosted or supported by the Foundation, including webinars, community gatherings, conferences, and research‑focused sessions designed to connect families, clinicians, scientists, and advocates. Check back often for new opportunities to learn, participate, and connect—events are added throughout the year.