EPILEPSY SUPPORT NETWORK OF ORANGE COUNTY
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Mission Statement
The Epilepsy Support Network of Orange County (ESNOC) was founded in 2009 by parents of children with epilepsy who were anguished by the inability to stop their children’s seizures, side effects and cognitive decline. They turned their heartbreak into action and have dedicated themselves to improving the lives of children, teens, and adults diagnosed with epilepsy in Orange County. ESNOC is the only organization of its kind in Orange County specializing in epilepsy, linking the community to specialty care and offering hope for a better future to this population.
About This Cause
BACKGROUND OF ORGANIZATION The Epilepsy Support Network of Orange County (ESNOC) was founded in 2009 by parents of children with epilepsy who were anguished by the inability to stop their children’s seizures, side effects and cognitive decline. They turned their heartbreak into action and have dedicated themselves to improving the lives of children, teens, and adults diagnosed with epilepsy in Orange County. ESNOC is the only organization of its kind in Orange County specializing in epilepsy, linking the community to specialty care and offering hope for a better future to this population. ESNOC works closely with epileptologists, neurologists and psychologists from Children’s Hospital Orange County, UCI Epilepsy Center and Hoag Hospital Epilepsy Center, to serve our community through the delivery of high-quality information and support provided by epilepsy experts. Several physicians from these institutions serve on ESNOC's Advisory Board. We are a valued resource to both the medical providers and the community (including schools and early childhood education groups) by fulfilling key needs for referrals to epileptologists and epilepsy centers; intensive education to newly diagnosed individuals/families; support groups for all ages; ongoing, in-depth education provided by experts; and more. ESNOC has developed a number of critical programs to provide epilepsy-specific information on treatments, professionals, research and resources delivered with compassion and experience. ESNOC programs include Information & Referral, Epilepsy 101, emotional and educational support groups for parents, children and adults, a Teen Club, and school nurse and community presentations on Seizure Recognition and First Aid, as well as Building a Healthy Brain. These groups are facilitated by medical and behavioral health professionals who are qualified to address the specific epilepsy topic presented. ESNOC exists for the estimated 32,000 Orange County residents affected by epilepsy, with special interest in the approximately 11,200 individuals (30%) in Orange County who continue to have seizures that are unable to be controlled by medication, as well as the 10,000 others who only experience seizure control at the cost of debilitating side effects from medications. Our urgency is directed toward the individuals who continue to have seizures despite repeated medical treatments because they are at greatest risk of brain damage and/or even death from seizures. We are particularly focused on our outreach and education efforts identifying infants with Infantile Spasms and children with catastrophic epilepsy syndromes (Lennox-Gastaut, Dravet, Doose, etc.). Families with children braving these chronic conditions look to us for support and direction to specialists in hopes of finding relief from their suffering. STATEMENT OF NEED Each year, 50,000 people die in the U.S. due to a seizure or an injury directly related to a seizure (www.cureepilepsy.org). In Orange County, an estimated 32,000 people have epilepsy including over 10,000 whose disease is uncontrolled. Side effects from seizures can range from fatigue and confusion to more serious complications such as life-threatening rashes, pancreatic failure, aplastic anemia and liver failure. Prolonged and repeated seizures cause brain damage and even death. One in 50 children will be diagnosed with epilepsy and children between ages 0-2 experience the highest incidence of epilepsy (Epilepsy Foundation). For children, the most common problems associated with epilepsy include cognitive, motor and social delays and progressive brain damage if seizures are not controlled. Many seizure-related side effects disturb their ability to succeed in school by producing slower processing rates, learning difficulties, memory issues, impulsivity and attention problems. ESNOC expeditiously guides parents and through the complex nature of this often progressive disease in order to stop the seizures before brain damage or death occurs. GOALS & OBJECTIVES 1) To provide comprehensive information and referral to individuals newly diagnosed by epilepsy during including linking them to pediatric epilepsy specialist. 2) To help improve epilepsy control and quality of life by providing ongoing education and support to a projected 1,600 parents, infants, children, teens and adults annually. 3) To heighten awareness and understanding of epilepsy, to promote early diagnosis and reduce stigma associated with this devastating disease through a program of community education and public speaking, reaching 6,500 community annully. STAFF QUALIFICATIONS ESNOC’s leadership team is comprised of 6 paid staff and 4 board members who, combined, have over 90 years experience working with epilepsy organizations in volunteer, staff, and board capacities. Our Executive Director Janna L. Moore, MPA is a parent of a child with epilepsy and brings 17 years of experience in nonprofit management and education. Prior to ESNOC, she served as the Director of Programs for the Epilepsy Alliance of Orange County and Regional Program Coordinator for the Epilepsy Foundation of Greater Los Angeles. We have three contract employees: psychologist for parents, psychologist for teens, graphic designer for website, marketing, programs and outreach. We recently added Spanish-speaking staff member to serve our Spanish speaking population. Saving lives and preventing brain damage from seizures is our passion. EVALUATION ESNOC’s Executive Director and Program Manager contact and follow-up with every individual referred by an area hospital. They also respond immediately to each inquiry from a newly diagnosed family. Currently, we receive 5 weekly calls/e-mails from someone new to epilepsy. Most of our callers are parents of young children who have been traumatized by the experience of watching their child have a seizure. Starting a positive and trusting connection from the first contact is where our relationship begins. Each call requires an average of one hour to complete the intake. ESNOC continually assesses its programs and services through various means including participant feedback, observation, provider feedback and simple surveys. We have open and ongoing communication with parents, school personnel and the program staff of epilepsy and neurology centers and continually solicit feedback to improve our programs and services.