The night of last October 24, I promised my wife, Rosie, whom I had been married to for over 39 years, that I would tell her grand children all about her and do everything I could to make sure that Creutzfeld Jacobs Disease does not affect anyone else our family. She passed away a few hours later, the morning of October 25th at the young age of 59.
Creutzfeld Jacobs Disease not only took away the center of my universe, it took away the mother and best friend to our son and daughter. It took away my grandson Oscar’s, Mi-Ma and denied my grandson Louis, born three months ago, the chance to meet her. There were over 400 family members, best friends, old friends, new friends, and co-workers who looked to Rosie for inspiration, style and humor that came to her memorial. She was the light that fill any room that she would enter. These are not just my words. We’ve all suffered from her loss.
So in continuing to keep my promise, I’ve established the team of Rosie’s Reef, as part of Strides for CJD events occurring across the country September 28th through October 6 of this year, to help spread awareness of what this awful disease has to done to my family and many others, raise money for the CJD Foundation which is an advocate for federal funding for increased research, language with that links research funding for prion diseases, like CJD, with more common diseases such as Alzheimer’s and Parkinson’s which continue to benefit from CJD/prion disease research, provides direct research grants and offers support from families experiencing the disease. Most importantly, to support those that have taken on the challenge of finding an answer to this rare and 100% fatal disease.
Once this disease kicked in a little over a year ago, I watched and battled over her last 7 months. For us it was a slow debilitating death, It was mind boggling and devasting to my family and I, to see a loving, beautiful, strong woman, who was so full of life, to go through this short, yet protracted death. This is not only my story. This story belongs to many other families as well and people who have contributed to our society. While this disease is rare, it’s certainly not rare enough for many of us. I have personally met the spouses of war heroes, politicians, successful businessman, entrepreneurs, and wonderfully ordinary people with similar stories, through the CJD Foundation. Some, who endured longer declines and some whose declines were as short as a few weeks. Much too fast for a meaningful goodbye.
So I ask you, will you join me and wear your brightest in honor of Rosie, and walk with me to support the CJD Foundation on October 5th?
Event Details
Date: Saturday, October 5
Location: Shelter Island
2230 Shelter Island Drive, San Diego, CA 92106
Schedule of Events:
*Additional donation
*Event is rain or shine*
Captain: Glenn Mouritzen
