On November 5, 2022, I lost my husband, Chuck Romano, to Creutzfeldt-Jakob Disease (CJD). He was just 54 years old.
Fifty-seven days. That’s all the time we had from Chuck’s first symptom to losing him.
It’s been almost four years, and while so much has changed, my purpose and mission to support the CJD Foundation and all of the families who have been impacted by this terrible disease hasn’t waivered one bit.
CJD is a rare, rapidly progressive and Always Fatal dementia disease. There is currently NO Treatment and NO Cure. Chuck had the hereditary form of CJD—the same disease that took his mother years before him.
That is why I continue to participate. Why I continue to advocate. Why I continue to fundraise. And why Team Queso keeps showing up.
I do it for Chuck. I do it for every family who has heard the words “It’s CJD.” And I do it because I believe in a future where there are tools for early diagnosis, effective therapeutics for treatment—and ultimately a cure- I believe this can all happen if our bold and amazing research community has the resources to keep pushing forward.
Chuck spent his life serving others: 28 years in the U.S. Navy, a Bronze Star recipient, a mentor, leader, friend, husband and the person I loved most. Team Queso was ours long before CJD entered our lives. Today, I carry it forward in his honor.
This year, I’m asking you to stand with Team Queso again. Every donation helps fund the research, education, advocacy and support needed to change the future of this disease.
Four years without Chuck- that's still so crazy to me. A future without CJD doesn’t have to be.
We do this for Chuck; for every CJD family; and for the cure we refuse to stop fighting for.
Thank you for all of your support!
Shannon Romano
Coach, Team Queso