Canadian John Sprogis grew up with a younger sister, Michelle, who has Down syndrome. Michelle has lived a rich and purposeful life, thanks to progressive parents, tremendous support, and advocacy for people with disabilities. She is fully integrated into her community. Sprogis says Michelle “participated in all kinds of activities: dance, swimming, bowling, modeling, and Special Olympics.” She currently lives independently with two roommates with special needs. Following employment in a sandwich shop and a library, Michelle now works at a local bank, where she’s been employed for six years. “So, I have seen someone with a disability living a life without limits,” Sprogis says.
Sprogis is president/CEO of United Cerebral Palsy of the Inland Empire (UCPIE). UCPIE, a non-profit 501(c)(3) organization, has served the community since 1985. It is an affiliate of over 60 national United Cerebral Palsy organizations that provide services to people with developmental disabilities including cerebral palsy, autism, Down syndrome, and epilepsy. UCPIE provides programs and services in both Riverside and San Bernardino counties. “UCPIE’s mission is to advance the independence, productivity, and full citizenship of people with disabilities,” according to the organization’s website.
Cerebral palsy, also referred to as CP, is a term used to describe a group of chronic conditions that affect body movement and muscle coordination. It is caused by damage to one or more specific areas of the brain, which usually occurs during fetal development or infancy. CP is a group of disorders that affect a person’s ability to move and maintain balance and posture. It is the most common motor disability in children.
Symptoms of CP vary from person to person. A person with severe CP might need to use special equipment to walk, or might not be able to walk at all and need lifelong care. A person with mild CP, on the other hand, might walk a little awkwardly, but might not need any special assistance. CP does not necessarily get worse over time, but the exact symptoms can change over a person’s lifetime. All people with CP have problems with movement and posture. Many also have related conditions, such as intellectual disabilities; seizures; problems with hearing, vision, or speech; changes in the spine such as scoliosis; and joint problems.
United Cerebral Palsy of the Inland Empire is an organization with a mission to build community and resources for people with neurological and developmental disabilities. For example, insurance in the U.S. does not cover some customized equipment that can greatly improve function and quality of life. UCPIE works to raise funds to support these and other programs, including skill-building, family counseling, after-school classes, and respite care support. In terms of the latter, CPR-trained caregivers provide an opportunity to rejuvenate to primary caregivers. In any given month, UCPIE provides 250 to 300 families with respite relief.
UCPIE will work in conjunction with the 27th Annual Tour de Palm Springs in Coachella Valley on Feb. 8. The organizations have collaborated over the years to help provide adaptive and customized bikes for individuals. Many people with CP do not have a lot of muscle tone, so an adaptive bike can be life-changing. UCPIE and its preferred adaptive bike manufacturer, Freedom Concepts, created Coachella Valley Firebirds/UCPIE cobranded bikes in April 2024. “Hawk, 22 years old, was one of the recipients, and having never ridden a bike before, got on and rode for the very first time,” Sprogis says. “It was truly incredible to witness such a moment of achievement and independence.” Each person is unique, and the customization of bikes can require modifications to all parts to ensure adequate back and head support for riders. The bikes can run from $3,500 to $5,000 – often out of the question for many families.
Sprogis’ story – and the reason he is so committed to the UCPIE organization – runs even deeper. He and his wife, Colleen, love the desert. They got married in Palm Desert in 2002 and later had twins. Anyone with twins will tell you the challenges are exponential. But, one of the twins – their son, Cole – was diagnosed with cerebral palsy. “That is when we started to use the services of UCP of the Inland Empire, and I ended up on the Advisory Council for several years,” Sprogis says. “Cole and my family participated in UCP luncheons, the Tour de Palm Springs’ Team Freedom, and the holiday party.” Cole became very sick in 2022, and he was in and out of the ICU for 13 weeks. He died in October of that year. “Like any life event, it gives you pause to reflect on your life, and that is what I did, and with the history of my sister and my son, Cole, it seemed to make sense that I could provide hope to so many and perhaps enhance the offerings at United Cerebral Palsy of the Inland Empire,” Sprogis continues. “The CEO/president role was open and I applied for the position, and the Board of Directors offered me the opportunity to lead this company in May of 2023.”
The prevalence of CP is generally considered to be on the decline, particularly in higher income countries, according to research and studies at the National Institutes of Health. Quality healthcare is paramount; improvements in prenatal care and neonatal treatment plus a reduction in factors like premature births and low birth weight have helped reduce the number of people with CP. In general, wealthier countries with comprehensive health care – like many countries in Europe – show lower rates than the U.S. Despite this encouraging fact, people who deal with CP and other neurological and developmental disabilities still have to struggle to live their best lives and share their gifts and talents.
UCPIE has a robust fundraising strategy. A partnership with the Coachella Valley Firebirds hockey team led to a fundraising event that will occur at Acrisure Arena on March 15. You can also ride with Team UCPIE at the Tour de Palm Springs on Feb. 8 and/or join the 35th Annual Bowl-a-Thon – Superhero Theme on Sept. 20 at Palm Springs Lanes in Cathedral City (businesses can sponsor lanes). These events are intended to raise much-needed funds. An event called the Casino Royale Gala – a James Bond-inspired event that included table games, a silent auction, and live entertainment – was held in April 2024.
Supporters of UCPIE can choose many ways to get involved and make a difference in the lives of many neurologically and developmentally challenged neighbors. UCPIE’s mission is to foster life without limits for people with disabilities. You can support its efforts in myriad ways. For more information about services, events, donations, and volunteer opportunities, visit ucpie.org/.