About Us
Our Team
The leadership, advisors, and families who power the ZTTK SON-Shine Foundation — together on one page. Select anyone to read their full bio.
The team running the Foundation day to day
Leadership & Staff
Leadership and Staff at ZTTK SON-Shine Foundation serve either pro bono or through a grant. These dedicated volunteers and staff work together to oversee all research initiatives, build ZTTK awareness, and connect a global community.
Governance, strategy, and stewardship
Board of Directors
The Foundation is led by a volunteer board of parents, clinicians, and professionals who bring both personal connection and deep expertise to the fight against ZTTK syndrome. Every board member serves without compensation.
Guiding the research toward a cure
Scientific Advisory Board
Our Scientific Advisory Board brings together geneticists, neuroscientists, and researchers who help assess where the science stands, prioritise the most promising directions, and review the work we fund.
Clinical guidance for families and care
Clinical Advisory Board
Our Clinical Advisory Board brings together clinicians who care for children and adults with ZTTK syndrome, helping translate research into better day-to-day care and trusted guidance for families.
Representing the ZTTK community around the world
International Ambassadors
Our ambassadors are families around the world who represent the ZTTK community in their countries. Each bio appears in the ambassador’s own language — use “Read in English” to translate.