Would you like a better future for your child? Do you want scientists and pharma to invest in our disease? For researchers to find the small molecule or gene therapy that could help you, your child, or your family member? If so, don't limit the data available to researchers – they need your information!

The CACNA1A Natural History Study, designed and vetted by the Chung Lab at Columbia University, will provide valuable information to doctors and scientists about CACNA1A related disorders. Individuals will be asked to fill out detailed health questionnaires and provide comprehensive medical data, including MRIs and EEGs. The study has been approved by Columbia University’s Institutional Review Board (IRB), and all information will be de-identified and safely stored. Annual updates will characterize the course of the disease over time. It is a huge endeavor but by participating and telling your story, you will directly advance research on CACNA1A related disorders and contribute to a cure!

For all its challenges, 2020 was a transformative year in many ways. As our country continues to navigate the current challenges, including and especially the widespread impact of the COVID-19 pandemic, we have been heartened to see an overwhelming response to the CACNA1A Foundation’s work.