Our mission is to provide compassionate support for individuals and families impacted by 22q11.2 Deletion Syndrome. Our key areas of focus include support groups, community building events, education and awareness, and improving the well-being and quality of life for families, caregivers, and individuals.
Our founder and Executive Director, Allison Prine, is mother to Oliver, who was diagnosed with 22q11.2 Deletion Syndrome at two weeks old in the summer of 2022. Oliver and the joy and light that he embodies every day are the inspiration for the 22q Joy Collective. When his family received his diagnosis they were told of the most difficult, frightening, and uncertain parts of what it means to live with 22q, but nobody told them about the pure joy and the deepest love they would feel. Not only would their path be difficult, it would be full of the deepest meaning. Oliver changed the lives of those around him for the better and is an inspiration to everyone he meets. Allison’s work as a Marriage & Family Therapist has informed the development of the 22q Joy Collective out of a wish for all parents to have nurturing support and a compassionate community on this journey. When families feel connected and supported they are able to better support their children, to access services more easily, and to feel confident in advocating for their children with 22q. Hope and change for acceptance, quality of life, and deeper joy and meaning on this journey begins with supporting families in a trauma-informed and compassionate way.
Our non-profit is starting small with a dedicated group of volunteers who have been a part of our 22q journey from the beginning. These wonderful friends and family members have supported us, learned alongside us, and witnessed the waves of joy and grief that often exist hand in hand. In the future as our non-profit grows we will update the board and our policies to ensure that the families we support are always the top priority. Board introductions coming soon!
Phase One
Our initial goal is to offer support groups offered to parents and caregivers of children and adults with 22q11.2 Deletion Syndrome free of charge, funded by donations. We will also be coordinating local events in the SF Bay Area, beginning with 22q at the Zoo at the Oakland Zoo in California on June 4, 2023. Support groups are estimated to begin Late Spring/Early Summer 2023.
Phase Two
Expanding support to offer new diagnosis information for families including materials normalizing the highs and lows of the journey, a 22q Joy starter kit (notebook, sticker, enamel pin celebrating 22q Joy), and community outreach to improve compassion and support in navigating initial diagnosis and ongoing struggles.
Phase Three
Building community, empowering families, celebrating 22q Joy. Expanded events, advocacy and awareness campaigns, expanded network of support groups, free photography events capturing portraits of 22q Joy for families.