Project CASK

Project CASK is a 501(c)3 nonprofit on a mission to find a treatment and cure for CASK Gene Disorders- a rare and debilitating disease with less than 300 cases globally.

For the 2024 holiday season, our team at Cadman Group has chosen to support Project CASK as a recipient of our Cadman Cares program! Although you might not have heard of CASK Gene disorders, it sure hits close to home with us. Local residents of El Segundo, Megan Weber and her husband Andrew, had their first child in 2021 who was diagnosed with CASK shortly after her first birthday. With such little data coupled with a small community to lean on, the couple started on their rare and unique parenting journey to their child filled with many ups and downs.

Their daughter Olivia (affectionately known as Liv, Livvy, or “Monkey”) suffers from epilepsy they have been unable to control, hypertonia, hypotonia, microcephaly, auditory neuropathy, and non-verbalism amongst other symptoms.

At the time of her diagnosis, Olivia’s parents were told she had a 20%-25% chance of ever being able to walk, and very small chance of being able to speak. However, Liv refuses to let her diagnosis define her as the beautiful girl she is! She attends therapy 5 days a week and works harder than anyone they know. She has a smile that lights up a room and a cackle that will make your heart burst!

While there is no known cure for CASK at this time, there is still hope. Project CASK recently awarded its first grant to fund Gene Replacement Therapy for children impacted by CASK. With an initial $375,000 grant and an additional $1.8M needed to continue this study, every donation makes a difference for the future of those with CASK disease.

For more information or if you would like to learn more about how you can support the cause, visit https://www.projectcask.org/ today.