Connect CACNA1C Global Network Conference

On 23 June 2023, we were thrilled to gather our global CACNA1C individuals, families, caregivers, researchers, scientists, healthcare professionals, advocates, and supporters, for this virtual language-accessible conference. By embracing this digital platform, we ensured that everyone, regardless of their geographic location, had the opportunity to join us.

We collectively shared current knowledge and ongoing studies, exchanged ideas, and fostered collaborations that will help shape the future of CACNA1C research, and improve diagnosis, and care.

Our programme featured presentations by members of our Scientific Advisory Board and guest speakers, all experts in their respective fields. In addition, we had two breakout discussion rooms and a dedicated Q&A session where speakers were available to address questions. Using the inclusive Wordly Translation app, participants engaged in real-time listening or reading along in their preferred language.

All six presentations from the day are now available with language subtitles (Brazilian Portuguese, Chinese, English, Finnish, French, German, Italian, Norwegian, Russian, Spanish and Turkish). While we cannot guarantee perfect translation, as that is not possible with AI, our approach in preparing these presentations has eliminated transcription errors that by definition contribute to ultimate translation errors.

We hope these will leave you feeling inspired and well-informed about the latest advancements in the field of CACNA1C. Together, we can turn hope into action, driving advocacy forward and creating a significant impact on the lives of those affected.

This conference was a product of collaboration and passion to understand CACNA1C.

For transparency, costs incurred are those to The Stanley Grundy Foundation in funding the translation service, for which we are immensely grateful. Their generous support enabled this conference to be inclusive, accessible and global. Thanks to the generous contributions from individuals who support TSA’s mission, we have covered the post-production costs, ensuring that this conference will have a lasting impact.

A heartfelt thanks go to all speakers and Scientific Advisory Board members who gave their time so generously to share their latest knowledge and understanding of CACNA1C. Big thanks also go to NMHII, Cardiff University for hosting through their conference Zoom subscription.

To the CACNA1C families and individuals – you are not alone on this journey!

Due to presentations including work not yet published please contact us to request access.

Download the conference programme

Help us provide more support to our community

Your donations will help us stage more events, bringing families together in a supportive environment.

Your contribution will help:

  • raise awareness to drive research and clinical development
  • enhance scientific understanding
  • reduce the isolation faced by families

With your help, treatment and a cure for future generations is closer to being found.

See other ways that you can support us.