It began with unexplainable fatigue then weakness in his left arm and shoulder for Jessy Ybarra of La Mesa.
“I regularly worked out with my trainer three days a week and it seemed like one day, my left side just couldn’t keep up with shoulder presses and pushups anymore,” said Ybarra. “Then, my left pinkie finger started curling up. Then, there was a twitch on my left triceps.”
After numerous trips to the doctor and a year of infusion treatments for what was believed to be an autoimmune disorder, the September 2017 diagnosis was confirmed: ALS, or amyotrophic lateral sclerosis, often referred to as Lou Gehrig’s disease, a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord for which there is no known cause, treatment or cure.
“I’m grateful that I’m progressing slower than most and I’m still able to walk and get around, but I’m not sure how much longer I will have the use of my hands or mobility on my own two feet before I need a wheelchair,” said Ybarra, 54, who works as a vice president for a local technology company. He spells his first name “Jessy” but it is pronounced as “Jesse.”
Jessy and wife Arlene have agreed to serve as legislative advocates for the local ALS Association Greater San Diego Chapter. As representatives of the local chapter, they will travel to Washington, D.C., June 9-11, for the 2019 National ALS Advocacy Conference. Activities will include visiting Capital Hill to share personal stories with members of Congress and advocate for additional funding for research and care services.
“Our comments to the legislators and their staff members will focus on the ALS Association’s mission to find a cure and improve the lives of those living with and affected by ALS,” said Ybarra. “I feel a unique responsibility, purpose and determination to speak for those who have lost their voice while I still have mine. I’m looking forward to this experience.”
Ybarra has worked for the past 29 years for CollegeSource, Inc. a Kearny Mesa technology company offering software solutions that help higher educational institutions with degree audit, degree planning and transfer articulation. Jessy and Arlene’s blended family includes Jessy’s daughter and granddaughter and Arlene’s son.
“We’re very proud of Jessy and his courageous efforts to advocate for ALS in the nation’s capital,” said Steve Becvar, executive director, ALS Association Greater San Diego Chapter. “He is living proof that help is available to families who are impacted by this devastating disease. Our patient load is expanding because we’re increasing our public outreach and awareness efforts and receiving more referrals as people learn about the resources we’re ready to provide.”
Becvar said medical expenses associated with ALS can cost up to $250,000 annually, depleting families’ life savings. “Our chapter offers all services to people with ALS and their families free of charge,” he said. “We are always in need of support to help us expand our direct patient care and provide access to treatment and services that enhance quality of life, care and support.”
ALS, a rapidly, progressive neurodegenerative disease of the motor neurons, weakens muscles and impacts physical function. Eventually, people living with ALS lose the ability to initiate and control muscle movement, which often leads to total paralysis. Nearly 30,000 Americans are living with ALS at any given time, with an average life expectancy of just two to five years from the diagnosis of initial symptoms.
Currently, ALS officials said more than 200 San Diego and Imperial county residents are registered with the local ALS chapter. In 2017, 125 San Diego County residents with ALS were registered with the local chapter.
“Our patient load is expanding because we’re increasing our public outreach and awareness efforts and receiving more referrals as people learn about the resources we’re ready to provide,” said Becvar.
The ALS Association is the only national not-for-profit voluntary health organization dedicated solely to fighting against ALS on every front through research, public policy and care services. The mission of the ALS Association is to find a cure for and improve living with ALS. By leading the way in global research, providing assistance for people with ALS through a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering government partnerships, the ALS Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure.
The Greater San Diego Chapter, chartered in February 2013, is one of 39 chapters nationwide.
The San Diego chapter works closely with the ALS San Diego Clinic at the University of California San Diego, which has been certified as a Center of Excellence by the national ALS organization. At its San Diego offices, the local chapter also showcases an ALS bedroom and bathroom that is equipped with features and benefits that would be helpful to people with ALS.
For more information about the ALS Association Greater San Diego Chapter, visit www.alsasd.org.