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. 

About Fundraising

Donations of $250 and above are considered sponsorships.

Sponsorship Levels:

  • 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.

$4,844.00

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My Supporters

  • Sandy Namgung 1 week ago $250.00
  • Anonymous 2 weeks ago
  • Karah Sorensen 3 weeks ago $100.00
  • Eileen Houtzer For my friend in honoring her sweet husband, Jay, and for hopefully eradicating this horrible disease that also took my husband. Thank you! 3 weeks ago $106.00
  • Soren and Lauren Sorensen We love you! Soren, Lauren, Henry and Stella 3 weeks ago $75.00
  • View More Recent Supporters
  • Mason Family Eye Care Jay is already missed by our team. Let's end this horrible disease. Last month $400.00
  • TAMRA CHANDLER 3 weeks ago $265.00
  • Carole Colburn Last month $265.00
  • Mike Kluck Jay's memory and Jay is worthy of these efforts to conquer this insidious disease . Miss you. Mike Last month $265.00
  • Mike & Kim Witt With an abundance of love and snappy tune in our hearts we remember Jay! July 2022 $265.00
  • View More Top Donors

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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.