Team Rosie’s Reef and the Rosie's Reef Foundation were created last year in memory of Rosie Mouritzen, my wife of 39 years. The night of the 24th of October, 2023, I promised to help watch over our kids, to tell our grand children all about her, and do everything in my power to fight Creutzfeld Jacobs Disease. She passed away a few hours later, the following morning of the 25th at the young age of 59. For the second straight year we have joined Strides for CJD events occurring across the country. Last year, with the dedicated support of my children and some of our closest friends we hosted the Strides 4 CJD event in San Diego in nearly a decade. The event grew rapidly with five other affected families joining us, Strides San Diego made a significant contribution to the national effort. A fete that we are both proud of and humbled by.
We will be doing it again, this coming Saturday, October 4 at 9am, at Shelter Island, to continue to 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 the National Prion Surveillance Center, 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, and 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.
What is CJD? It’s a neurodegenerative disease that looks like Parkinson’s and Alzheimer’s all in one, but occurs rapidly. In our case, once this disease kicked in, I watched and battled over her last 7 months, watching her go from feeling vertigo, to forgetting what day it was, loosing her self confidence, loss of balance, delusions, loss of mobility, loss of being able to do her own make up, and loss of hand eye coordination —to the point she couldn’t feed herself. Then the loss of her ability to take care of herself, loss of speech, loss of control of her torsoe, her neck, and finally her ability to swallow. We were fortunate that she did not experience blindness, which happens to many. 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, 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.
Last year’s event drew over 200 participants, half of which joined us for our post walk brunch, presentation and fundraiser to make it huge success. We will do the brunch again, with a speaker to be announced in the near future. This year we’ve made registration easier and direct through this website.
Will you join us?