Donations

We are asking all donations to go through Riaan Research Initiative. They are a fully registered 501(c)(3) non-profit organization (a public charity) and as a result all donations are tax-deductible. Riaan Research Initiative is dedicated to promoting and furthering translational scientific research to advance treatments for severe and life-limiting genetic disorders. They aim to identify and facilitate projects to improve the lives of patients suffering from genetic conditions lacking approved therapies and are also the first patient/caregiver-led research advocacy organization for Cockayne Syndrome, with a more specific focus on ERCC8/CSA mutations.

Currently Riaan Research Initiative has raised over $1.2 million out of their $4 million goal. Please consider making a tax-deductible donation to help further their essential research. 

Even though CS is rare in and of itself, genetic disease is not. There are over 7,000 known rare diseases, many of them genetic. One in ten Americans has a genetic diagnosis. This type of research will not only help Violet but has the potential to change the way we understand genetic disease and treatments.