In loving memory of the best role model a son could ever have!

My dad was given a 80% probable diagnosis of Sporadic Creutzfeldt-Jakob Disease (or s sCJD) in June of 2002 at 55. We saw subtle symptoms of this monstrous disease 10 years earlier. Upon given the grim diagnosis and prognosis my dad decided to donate his brain to further research into CJD. Simultaneously my dad decided that he would like to spend his remaining days at home surrounded by friends and family. Unfortunately we were unable to get in-home hospice for my dad, so as a family, both immediate and extended, we cared for my dad at home. Me in and my sister were still in high school at this time, so the majority of the caregiving responsibilities were upon my mom. There were times where I took up the caregiving role, a task I couldn't imagine. I have quadriplegic Cerebral Palsy, so caring for the man who once cared for me was very tough. I would frequently accompany my parents to my dad's weekly neurologist visits at the Los Angeles VA hospital. On the way to one of these visits in a moment of lucidity, my dad knew I knew what he was going through. He made me promise to spread awareness and educate about CJD and its related Prion diseases. After a 4.5 moth battle with CJD my dad passed away in a convalescent hospital one month after his 56th birthday. Since his passing I have advocating for awareness and education about CJD and its related Prion. diseases. Always remember, Awareness is one step closer to a cure.

An Honorable Civil Servant, Father, Grandfather, Uncle, Brother, Husband and Hero

My dad served his country honorably with two tours  in the the Vietnam War as a Corpral in the United States Marine Corps. After being discharged he earned a Bacholar of Arts fron San Jose State University than a Masters in Public Administration also from San Jose State University . He gratiously served as a civil servant for over 25 years in the great state of Colifornia in appointed county and city government positions. He was espescially fond of the position of City Manager for eight cities.

His fight with this monsterous disease started in 1998. His symptoms started to peak out with balance issue simply being told he had "weak ankles" those symptoms subsided and short term memory loss ensued unable to follow his collgues to out of town meetings while driving, these symptoms were attributed to stress of his career. Later in 2001. He was in a city council meeting negotiating a contract for the city, and like the flick of a light switch he forgot where he was and what he was doing. Months later the city council used the unsuccessful negotiation  as grounds to fire him. Later that year we moved to the city of Oxnard, CA hoping with extended family around he would be able to find another City Administrative position. He had a job interview  out of town. As soon as he drove onto the freeway he forgot where he was going. Fortunately my dad was able to drive his way back home. Weeks later he was in a minor accident and had his driver's license suspended, as well as being unable to find his the way out of his doctors office (fortunately  he was able to use his cellphone to call my uncle and ask him for a ride home) Based these sysmptoms my mom took him to the Veterans Affairs hospital in Los Angeles. He was addmited under observation, he was put through a battery of test from ALS to Early Onset Alzheimer's. All those test came back negative, all the while we were hoping for diagnosis of cancer. Days later we received a 80% chance of probable Sporadic CJD. Upon this probable diagnosis, my dad wanted to make contrbution to accelrate Prion disease research, he   donated his body to the National Prion Disease Research and  Servaillence Center. He also decided to spend his remaining  days at home with us. After a 4.5 month courageous battle with this monsterous disease, my dad took his last breath on October 18, 2002. Passing one month after his 56th birthday. 

Dad, you are the best romodel for me and Sonya. We hope you are resting comfortably with your parents and sibilings. We will reunite when we are called Home...  #cureCJD #curePriondisease

Campaign Progress





of your goal reached

My Supporters

  • Ignacia Benavides de la Cerda August 2020 $50.00
  • Facebook Donor July 2020 $30.00
  • View More Top Donors

My Badges

View All Event Badges

My Teammates

Confronting CJD & Other Prion Disorders