Carole's Fundraising Page for Jay-CJD
Jay's Story-Our Story
Jay was a one in a million kind of person so I guess it stands to reason that a one in a million disease would take him from us. He was vibrant, kind, loving, brilliant, creative, funny and handsome to boot! He was a loving husband, father, brother, uncle and friend and his life was filled with love, music and laughter. He was a musician from the time he got his first guitar as a young teenager and he spent his life playing the guitar, banjo and bass fiddle...entertaining thousands on the Michigan and Detroit Princess Riverboats as well as at private gigs throughout Michigan and of course, playing for anyone who would listen.
He loved history, telling stories, being with me and with his family, a good Merlot (on occasion) and Jeopardy. His smile lit up any room, his laughter was contagious and his heart was as big as the world!
He started feeling “weird” in mid-March 2022. By mid-April he began having visual distortions. He entered the hospital on April 27th, got the CJD diagnosis on May 14th (confirmed through Spinal Fluid testing) and passed on May 22nd. I liken his (and our) journey with CJD to riding one of those super big roller coasters where the climb to the top is just slow enough that you know where you are going, but the descent on the first hill is terrifyingly fast and is over before you know it. It is devastating and heart-breaking both for the person suffering through it and for those who watch, knowing there is absolutely nothing you can do to stop it.
I know that Jay would not want me to wallow in his death. I know that he would want me to move forward and I believe making it my new life mission to raise both awareness and funds for research for CJD is something that would make him both happy and proud. Jay lived his life with utmost integrity and I am approaching everything I do with the perspective of “What would Jay do?” He would be doing all he could to help find answers and a cure for this horrific disease. I am committed to doing the same!
Text to Give
To donate to my Strides for CJD text STRIDES2022 to 50155.
Donations of $250 and above are considered sponsorships.
- Diamond: $10,000
- Platinum: $5,000
- Gold: $1,000
- Silver: $500
- Bronze: $250
Diamond and Platinum Sponsors will have their name or logo displayed on participant t-shirts, the Strides for CJD website, and signage. Gold Sponsors will have their name or logo displayed on the Strides for CJD website, and will have their name listed on participant T-shirts and signage. Silver and Bronze Sponsors will have their name listed on the Strides for CJD website only.
Jay doing what he loved most...entertaining people with his banjo!
Jay playing his *first* love...the guitar!!
Always in a the mood for a nap!
The love of my life!
Who could resist that smile? Not me!
Jay would never turn down a good cup of coffee!
A man with a great sense of humor!
Oh how I love you Jay!
About Strides for CJD
Strides for CJD is an annual walk/run to raise awareness of Creutzfeldt-Jakob Disease (CJD), a rare neurodegenerative disease that has no treatment or cure. Through this event, anyone -- anywhere -- can pay tribute to their loved ones and raise funds for the CJD Foundation, a 501(c)(3) organization.
Funds raised support our programs including:
- Our 24/7 helpline, support groups, conference, and other family programs throughout the year.
- Research grants to help scientists make important discoveries and bring us closer to a cure.
- Medical education to help raise awareness and understanding of prion disease.