The night October 24, 2023, I promised my wife of 39 years, Rosie, that I would tell her grand children all about her and do everything I could, to make sure that Creutzfeld Jacobs Disease (CJD) 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.
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 a little over two years ago, we 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 both mind boggling and devasting to see a loving, beautiful, strong woman, who was so full of life, to go through this short, yet protracted death. 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 those of us that have lost our loved ones. 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 my established the team of Rosie’s Reef, as part of Strides for CJD events occurring across the country. 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 and Strides San Diego raised over $70,000. A fete that we are truly humbled by.
We will be doing it again on Saturday, October 4 at 9am at Shelter Island to continue to spread awareness of about this awful disease, raise money for the CJD Foundation which is an advocate for federal funding for increased research and provides support to affected families. It also organizes and holds advocacy events to lobby congress for funding for the National CJD Surveillance Center, budget language with that links research funding for prion based diseases, like CJD, with more common diseases such as Alzheimer’s and Parkinson’s, which continue to benefit from CJD/prion disease research. Direct research grants are also provided by the CJD Foundation. Most importantly, to support those that have taken on the challenge of finding an answer to this rare and 100% fatal disease. Currently, the National Institute of Health is in financial, which fund the National Prion Center, which houses all the records, data, and donated tissues necessary to research this disease and develop a cure. The funding for the National Prion Center is currently in jeopardy of loosing 100% of its funding, which makes this years fundraising even more critical.
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 once again hope to make a significant contribution to the fight against Creutzfeldt-Jakobs Disease. Will you sponsor and join us?
