Ed Tinoco’s multiple sclerosis (MS) story began many years before his official diagnosis of the unpredictable disease in 2002. For years prior, Ed was in pain, had difficulties balancing, and felt exhausted and lethargic without reason. Although MS is the most common disabling neurologic disease of young people, the variability and diversity of symptom presentations make it very difficult to diagnose. After years of living with these symptoms and no clear explanation for them, Ed was finally diagnosed with MS. He has said the diagnosis gave him a sense of relief, in a way, since he finally knew what was causing these worsening symptoms. When asked how MS has affected his life, Ed recalls that the biggest effect of the disease at the beginning of his journey was losing his ability to run and play with his two sons. Fortunately, Ed was able to regain some of those functions after being placed on a disease-modifying therapy.
A first-generation college student, Ed Tinoco holds a Master of Library and Information Science degree from San Jose State University and a Bachelor of Arts in English degree from California State University, Northridge. In addition to these degrees, Ed is currently pursuing his Doctorate of Education at the USC Rossier School of Education, with a concentration in higher education. Prior to his academic career, Ed served in the United States Army’s 75th Ranger Regiment and remains an active member in a variety of Veterans’ groups. For the past sixteen years, Ed has worked as an academic business librarian at the University of Southern California.
Despite his diagnosis, Ed has been an active member in the MS community, serving on the Board of Directors for the Paralyzed Veterans of America Research Foundation since 2014. As a member of the board, Ed’s primary responsibility is to aid in the selection of the research foundation’s grant recipients. Ed is also a member of the Congressional Veterans Advisory Committee in the 29th Congressional District, where he serves as a conduit and advocate for Veterans in the San Fernando Valley. When Ed is not at work or advocating for Veterans, he enjoys spending time with his family, taking walks with his wife, and gardening in his backyard with his Golden Retriever, Collin, and desert tortoise, Harry.
Ed was chosen to be a consumer reviewer for the CDMRP’s FY19 Multiple Sclerosis Research Program (MSRP) after being nominated by Cheryl Vines of the Paralyzed Veterans of America Research Foundation because of his personal experience with MS and his passion for Veteran advocacy. He has remarked that throughout the process of reviews, it gave him great satisfaction to see that there is much work being done to find a cure for the disease. He adds that he is grateful for the work being done by the scientific community on behalf of those who suffer from MS, and that it is truly gratifying to see the efforts being put forth to find ways to lessen the impact of the disease. Ed reflects that serving as an MSRP consumer reviewer has given him an appreciation for the healthcare professionals and practitioners dedicated to the research efforts in finding a cure for MS, and encourages anyone who has the time and willingness to learn and appreciate the scientific work that is being done, to consider serving in the MSRP. It is because of passionate consumer reviewers like Ed Tinoco that the MSRP is able to make a significant impact for those afflicted with MS and to pave the path to a cure for this disease.
Last updated Tuesday, September 15, 2020