This year, our global CASK family faced many losses - ranging from missed milestones for many, to the deaths of a few sweet warriors. Between February and May 2023, it was as if our entire global family held our breath together as we mourned with the families of four amazing young people, whose lives deeply touched our own.

We celebrated the beauty of their lives and were inspired by the tender ways their families honored their memories. . .and we each struggled with our own feelings of loss for loved ones, or perhaps even guilt for enjoying the fortune we still had in each blessed moment we could still hold our precious “CASK kickers.”

Regardless of the source for the grief we each face, we’re learning that it’s a lifelong and daily journey to process those feelings. For our summit gathering this year, we decided to dedicate a moment to just “get comfortable.” This hour will be a time when you can bring your favorite snacks, comfy pjs or blankets - whatever helps you survive this rare life - and just enjoy the company among CASK friends.

Join us for this virtual mingle event with our guest, Jen Ziegler.

On March 9th 2020, Jen and her wife welcomed twin boys into the world. Shortly after birth, baby Tristian was diagnosed with CASK gene disorder and MICPCH. He lived for two months and on May 15, 2020, he took his last breath. Since losing Tristian, Jen has realized that she has a greater path, and decided to go back to college full-time majoring in psychology. She’s approximately three months away from her Bachelor's degree and plans to continue her education in order to receive her Master's. Jen describes grief as “a complex feeling that anyone can feel for almost any reason.” She also says that “there are a lot of different stages of grief and in my journey that will forever continue. Now I want to help others to understand that it is OK to grieve in your situation if and when you feel safe to do so.”