Linda Lee Jones
December 27, 1945- July 19, 2021

CJD is an absolutely devastating and rapid disease that we unfortunately got to witness first hand with our grandmother, Linda Jones. She was known as "Naanie" or "Naans" and she was one of a kind. She was so unapologetically herself and didn't take crap from anyone. She loved hard and deep and was the matriarch of our small tight knit family. Naans had the best sense of humor and craziest laugh. She always matched-even down to her flip flops. Her wit and sarcasm was the best and she kept us and her nurses laughing until she could no longer speak.

We walk in her honor and to raise awareness to CJD in hopes that one day no family will have to go through what we did. 

Naans started exhibiting signs in February 2021. At first the doctors thought she may have had a mild stroke and was suffering from dementia. Her memory and small motor skills started deteriorating quickly and in April her neurologist was fairly certain that she had CJD.
Within weeks, our Naans, who was independent and self sufficient, and never had to use a walker before was now using one. It wasn't long before she was unable to use the walker at all. She was bed ridden and unable to get in and out of bed without assistance. Each week she deteriorated more and more. She was unable to feed herself and really struggled with remembering who people were and even where she was. By the beginning of July, she struggled to speak, mostly mumbling quietly and we were unable to understand her. Soon after she wasn't speaking at all and refused to eat. She spent her last week sleeping before she passed on July 19, 2021.
THREE MONTHS. Thats all it took from diagnosis before she was gone.
We had a beautiful service and celebration of life for her on August 3, 2021.

UPDATE- 8/11/2021
WE DID IT!
We hit our $1000 goal!
This means that her name will be included on the participant's t-shirts. 

I adjusted our goal to see just how far we can get and how much we can raise for this amazing foundation that was so helpful through this process. Naans would be so proud of all of us for raising awareness and donating to the CJD Foundation.

Thank you to EVERY SINGLE person who donated. Our family appreciates you so much! If you would like to walk with us on October 3rd, please register. If you have any questions, please do not hesitate to reach out to me. -Ashlee Orcutt