The CJD foundation for me is very close to home. It is heartbreaking that this disease is so unknown, often misdiagnosed and without a cure. In my mothers case, she started showing symptoms in May 2019, 4 months before her 60th birthday. Multiple doctors ran multiple tests and could not find anything physically wrong with her. By June she was on FMLA from her job and using a walker. July 3 she was hospitalized, more tests were run and a psychologist was called because the team of doctors diagnosed her with extreme stress. She tried to vocalize her concerns, and I desperately tried to advocate for her, and that the doctors would take her concerns more seriously. I knew that something physically, not mentally was wrong with her. For my mom, that was the worse part- that no one believed her. The hospitals advice was to move my mother, at 59, to a nursing home so she could receive care and physical therapy. Against medical advice, I signed my mother out of that hospital and drove her to UT Southwestern in Dallas. Again, multiple tests were run over many, many days. Doctors were now talking about CJD as a strong possibility but tests had not come back yet. Her mental capacity started to disintegrate, as the physical symptoms worsened. July 20 she slipped into a semi coma, where she would never speak again. She could occasionally smile at a funny joke or on command, but mostly she was physically paralyzed. July 26 she was officially diagnosed with CJD and moved to hospice. My mom was a full of life person who was part of a poker group, domino club, worked full time while taking care of both of her parents. My mom was an amazing grandmother to 4, or as she was called “Tootz”. She loved to travel and was generally always up for a good time. Many people were shocked at the sudden decline, just seeing or talking to her weeks before, ourselves included. August 2, 2019 she lost her battle with CJD. My sister, Alisa and I have been involved with CJD foundation for the last few months, knowing there is nothing we can do for her, but hoping others wont have to suffer in the future. I am excited to be doing something, anything to help towards this cause, as it is one of the few things a grieving one can do on the road to healing. Simply giving back.