2006 Progress Report
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2006 Progress Report Multiple sclerosis interrupts the flow of information between brain and body and stops people from moving. With the help of people like you, the National MS Society addresses the challenges of each person whose life is affected by MS and helps them stay connected to the great big moving world. A Message from the Chairman of the Board & Chapter President Dear Friends, The Southern California Chapter of the National Multiple Sclerosis Society's growth and sharp focus on the best services and on funding the most promising research accelerated in 2006. Dave Perren In December of 2005, our Chapter joined forces with the Channel Islands Chapter to better serve people with MS and their loved ones. The MS community in Ventura, Santa Barbara and San Luis Obispo counties is now an integral part of the Southern California Chapter. This year in the tri-county territory, we more than doubled the number of programs, activities and services for people with MS and their family members; we increased Walk income 50% over the previous best; and our community development efforts continue to lead to further advances. Leon LeBuffe, PhD We enjoyed great success with our MS Walk-which passed the $2 million mark for the first time, and with our $2.6 million Dinner of Champions. Our merger also allowed us to reintroduce the Bike Tour to the Southern California market area with a two-day ride in Ventura and Santa Barbara counties. The Santa Barbara MS 150 Bike Tour & Fest raised more money than ever before and gives us a good foundation to continue growth with this event. The Golden Circle campaign also greatly exceeded its budget and passed the $1 million mark for the first time. In 2006 The Golden Circle officially launched its campaign to raise restricted funds for Promise 2010, aimed at encouraging innovative research into four highly promising areas that had previously been under- explored, as well as at improving MS medical care. Most of these restricted dollars are funding the Nervous System Repair and Protection initiative which seeks to restore function and repair damage done by MS, and the Pediatric MS Centers of Excellence, a first-of-its-kind network of centers established this year to better understand, diagnose and treat childhood MS. Also in the area of research, we have witnessed expansion in the number of treatments now available to treat this unpredictable disease. This summer the FDA approved marketing Tysabri for people with relapsing-remitting MS. The Eric Small Centers for Optimal Living with MS are a shining example of our Chapter's expansion and our precision in programs and services. Building on the 2 model of the flagship Marilyn Contents Page Hilton MS Achievement Center at Chapter Programs 4 UCLA, we created an expanded Financial Information 7 network of centers at USC, Research 7 Rancho Los Amigos and Casa Special Events 8 Colina. In partnership with the Dinner of Champions 8 region's leading centers for MS MS Walk 13 care, we are now able to provide MS Challenge Walk 18 specialized programs that can MS 150 Bike Tour & Fest 19 promote well-being, optimize MS Golf Classic 20 function, and enhance quality of Foundation & Corporate Grant Support 21 life for many more people living The Golden Circle 23 with MS. All of this expansion is a direct ultiple sclerosis interrupts the flow of result of the dedication, support Minformation from the brain to the body and and generosity of our wonderful stops people from moving. Every hour in the donors, individuals, corporations United States, someone is newly diagnosed with and foundations. MS, an unpredictable, often disabling disease of the central nervous system. Symptoms range Sincerely, from numbness and tingling to blindness and paralysis. The progress, severity and specific symptoms of MS in any one person cannot yet be predicted, but advances in research and Dave Perren treatment are moving us closer to a world free of Chair, 2004-2006 MS. Most people with MS are diagnosed between the ages of 20 and 50, with more than twice as many women as men being diagnosed with the disease. MS affects more than 400,000 people in the U.S., and 2.5 million worldwide. Leon LeBuffe, PhD President S stops people from moving. The National MMS Society exists to make sure it doesn’t. We help each person address the challenges of living with MS through our 50-state network of chapters. We fund more MS research, provide more services to people with MS, offer more professional education and further more advocacy efforts than any other MS organization in the world. The Society is dedicated to achieving a world free of MS. We are people who want to do something about MS now. Marni Deckter, Progress Report Editor Southern California Chapter Programs and Services Chapter Services Grow to Address Expanding Needs 2006 represented a year of exciting growth in programs and services within the Southern California Chapter. Not only have new services emerged to address the diversity of challenges facing people living with MS, but the Chapter also expanded the delivery of programs into new territories. We now serve over 12,500 people with MS. The programs and services delivered by the Southern California Chapter are unsurpassed when it comes to addressing the wide range of challenges faced by people living with multiple sclerosis. For the third time in four years, the Chapter earned the national distinction of excellence-the 2006 Cavallo Award-recognizing outstanding work in servicing the diverse needs of the MS community throughout our expanded region of Los Angeles, Kern, Inyo, San Bernardino, Riverside, San Luis Obispo, Santa Barbara & Ventura counties. Three New "Centers for Optimal Living with MS" Open Doors Modeled after the successful programs at The Marilyn Hilton MS Achievement Center at UCLA, The Eric Small Centers for Optimal Living With MS represent a new collaborative partnership for the Society that is like none other in the country-a network of leading centers for MS care not only dedicated to the medical management of this disease, but also committed to promoting well-being, optimizing function, and enhancing the overall quality of life for those living with MS. In Winter 2006, Optimal Living with MS, a brand new twelve-week program focused on improving functioning through physical and occupational therapy services launched at the University of Southern California (USC) The delivery of Optimal Living with MS provides a new opportunity to partner with USC and two of its #1 rated graduate programs-occupational therapy (OT) and physical therapy (PT)-bringing together the resources of these two departments for the first time. The program aims to enhance the quality of life for participants with mild to moderate MS and beginning levels of functional change in areas of mobility and balance. The twelve-week program operates concurrently with the University's fall and spring semesters, and is integrated into the educational curriculum of students in USC's doctoral-level PT and OT programs. These students will integrate PT and OT with group exercise, personalized education and social support to help participants restore and maintain useful movement, as well as improve physical functioning for enhanced health and well-being. 4 Chapter Programs & Services Spring 2006 marked the launch of the popular Living Well at Casa Colina Center for Rehabilitation in Pomona. This proven 12-week series offers a broad spectrum of education and experiences for individuals who are more recently diagnosed and/or living with mild MS symptoms, helping them to better understand the disease and build lifestyle habits for living well with MS. This new partnership broadens the reach of this valuable service to new MS populations throughout the San Gabriel Valley and portions of western San Bernardino County. In October 2006 the Chapter, in partnership with Los Amigos Research and Education Institute, Inc. (LAREI) opened the doors to the newest Center named after this initiative. The Eric Small Center for Optimal Living at Rancho Los Amigos National Rehabilitation Center in Downey, provides a day wellness program two days a week, with one day serving the Spanish-speaking MS community. This new resource delivers preventative, restorative and rehabilitative services for individuals facing multiple MS- related challenges to indviduals from the areas of East Los Angeles, the South Bay, Long Beach, San Pedro and the southwest San Gabriel Valley. Yoga, adaptive exercise, support groups, memory enhancement, and health education are a few of the many programs that provide needed support for participants to overcome daily obstacles and to achieve personal goals. Expanding Into New Communities In December of 2005, the Southern California MS family grew by 2,500 people with MS when the San Luis Obispo, Santa Barbara and Ventura County communities of the Channel Islands Chapter became part of the Southern California Chapter. A survey was conducted in the community shortly thereafter in order to get a better understanding of the needs of those living with MS in the tri-county area. The results of this survey helped regional staff and volunteers begin dialogues with health professionals, community agencies and foundations on how to better address the needs of this segment of their community, as well as offer workshops that help address the interest to live well with a chronic illness like MS. The merger also provided residents of these communities instant access to a whole array of new services including counseling and support, care management, and financial assistance. Improving Access to Healthcare for the Spanish-Speaking MS Community Some of the greatest challenges faced by Latinos with MS in accessing medical care are related to miscommunication, lack of appropriate information and services, and cultural and linguistic differences.