Mia, Nick, and I have been so grateful for the support you have given to the CJD Foundation. This will be our third year raising funds. Money raised has provided important research grants as well as direct support to families caring for their loved ones. Please take a moment to review the CJD Foundation website to better understand all they have done—and continue to do. It is a truly remarkable organization.
Please note that this year Mia, Nick, and I will not be walking, as Nick and Kacie are getting married on October 3rd. A wonderful blessing. Although we always miss our dear Amy and Luke, we hold them close and share in the beautiful things that life continues to bring.
Below is the original recap:
In early January 2022, my wife, Amy, began experiencing headaches and other symptoms resembling dementia. She underwent several brain MRIs, a spinal tap, and various tests to determine the cause. Over the course of several weeks, all possible conditions were ruled out except one: prion disease. In late January 2022, Amy was diagnosed with prion disease—more specifically, Creutzfeldt-Jakob Disease (CJD). CJD is a very rare disease, with approximately 500 cases each year in the United States. It has no cure and is not treatable. The disease is inevitably fatal. As you can imagine, this was a devastating shock to our family. It is a cruel disease that left Amy unable to move or speak. She passed away on December 25, 2023, almost two years after being diagnosed.
As I’ve reflected on the life Amy and I built in Hillsdale, I realize how truly blessed we have been to raise our family here. Amy’s friends—from Hillsdale, the West Coast, and many other places—as well as our family, have shown her and all of us so much love and support. We are truly humbled and deeply grateful for these close friendships. We are also so very grateful for the support and kindness of Valley Hospice.
I hope you will support this fundraising effort. It not only provides awareness and support for families caring for a loved one with CJD, but it also funds research grants that may bring us closer to a cure. There is meaningful progress being made through ongoing research.
Please note: You may choose to register to walk on October 3 ($30 or $35) and/or donate (see buttons below).
