A message from Kristina Hone, Founder and CEO

On July 5th, I found myself on the floor with my husband, carefully listening to the genetic counselor on the phone, only half aware that I left Eliana in the kitchen with open paints. It was about her last test. She had a diagnosis. I felt shattered, trying to comprehend how our lives had just changed. Part of me was trying to listen. Part of me was preparing for more missed time from work. I was googling “CASK gene” . . . I was dying inside, facing the reality that this was permanent.

After the call, I ran out to find the room cleaner, with Eliana still happily painting, and a simple dinner on the stove. My boys soberly said, “We could tell that call was kind of a big deal. We didn’t know how long it was going to take, so we thought we’d back you up a bit out here.” That moment, which freed my mind enough to reach out to a network of other CASK Gene parents, was life changing. It’s our dream at The CASK Gene Foundation to improve both access to better information and a better diagnostic process. . . to see that when parents try to comprehend how their lives have just changed, they have quick access to HOPE and SUPPORT first. This is our way of saying, “We know that news was kind of a big deal. We don’t know how long this will be hard for you, so we thought we’d back you up a bit out here.”

With The CASK Gene Foundation, you’ll find a rich, global community of people who understand what you may be feeling. We are here to help you navigate your “What next?” moments. I would love to hear from you and support you any way I am able. You can email me at kristina.hone@caskgene.org or leave a voicemail at 801-210-0777.