When our children were diagnosed, most of us had never heard of CACNA1C. Neither had many of the doctors we saw. Timothy Syndrome and Long QT type 8 are so rare that clinicians may encounter only one or two cases in their entire career — and families are left to navigate that alone, often in fear, often without answers.

Timothy Syndrome Alliance exists because of that gap. We connect over 250 families across 41 countries, fund world-first research into speech and language outcomes, run a global patient registry with 126 participants, and in 2025 co-produced the first ever international clinical guidelines for our conditions. We do all of this as a volunteer-led charity, with 98.3% of every pound going directly to our community.

We are small. We are determined. And we are making real progress — but only because people like you choose to show up for families who had nowhere else to turn.

Whether you fundraise, donate or share this page, you are part of what makes this possible. Thank you