1. Don't waste a minute.
2. Never give up.
So, this effort is my intention to try to heed her advice one more time. Watching my mother battle CJD was the toughest experience of my life. The disease is truly cruel. There is not enough information published to easily or certainly diagnose it until it is oftentimes too late. The disease forces you to watch someone you love quickly lose their ability to communicate, see, take care of themselves, and eventually control their body. By the time my mom had passed, she had lost the ability to control most of her movements, including opening her eyes. It is my intention to do everything I can to prevent someone else from going through a similar horrific experience. This group is organized to raise money and awareness for a disease that we were told occurs around 4 times a year at Allegheny General, but continues to be shrouded in mystery.
My vision for this group is to raise money by the mile for the CJD Foundation. All donations will go directly to the Creutzfeldt-Jakob Disease Foundation. The mission of the Creutzfeldt-Jakob Disease Foundation is to support families affected by Prion Disease, raise awareness, and support medical education and research. You can learn more at https://cjdfoundation.org .