2005 Progress Report

2005 Progress Report MS attacks. Fear and unpredictability change lives forever. As we continue to search for a cure, there’s hope. For 59 years the National MS Society has been here to help people live with multiple sclerosis today and without MS tomorrow. People depend on us. This is why we depend on you. A Message from the Chair & Chapter President Contents Page Chapter Programs 3 Dear Friends, Financial Information 6 Research 6 2005 was an amazing year for the Southern California Special Events 7 Chapter of the National Multiple Sclerosis Society. Our Foundation Support 17 Golden Circle, Dinner of Champions, MS Walk, foundation, The Golden Circle 19 and planned giving efforts resulted in enough income to fund About MS 21 more research than ever before and to make a large dent on our 2.5 million dollar commitment to Promise 2010. We also spent more on programs and services - over $3 million - than ever before. Late in the year we received the exciting news that four teams of the world's best neuro researchers were launching our neuro repair initiative. If successful this can actually restore function and repair damage done by MS! We hope, we hope and we hope… We also received a wonderful $1 million grant from the Flora Thornton Foundation late in fiscal year 2005. This enables us to open Eric Small Centers for Optimal Living at USC, Rancho Los Amigos, and Casa Colina, in addition to our flagship operation, the Marilyn Hilton MS Achievement Center at UCLA, which continues to prosper. And we continue to offer literally hundreds of courses, programs, workshops and classes each month - in person, by phone or online - in our large, eight county territory. Yes, eight large California counties. Though this Progress Report reflects fiscal year 2005 (October 2004 - September 2005), we’d be remiss not to include here the biggest change of all: late in December 2005 our Board and the Board of the Channel Islands Chapter each voted unanimously to join forces. We're off and running, trying hard to bring our "best of the best" Cavallo Award- winning programs and services to Ventura, Santa Barbara and San Luis Obispo counties. We know the Channel Islands Chapter had a strong 31-year history of service. We want to do much more. We are optimistic for the future and we salute the Channel Islands trustee team: Larry Winter, Donna Dawson, Bob Frazee, Kim Phillips, Larry McEwen, Kathy Lukes R.N., and Dr. David Brandes, who have made our merger such a pleasure and, at least so far, a great success. Thank you to them; to our friends at UCLA, USC and Rancho Los Amigos: Dr. John Mazziotta, Dr. Florence Clark, Dr. Barbara Giesser, Dr. Julia La Plount, Dr. Helena Chui, Dr. Jim Gordon; to benefactors Steve Hilton and Flora Thornton; to our wonderful professional and support staff; and to all of our oustanding trustees and special friends for all you did to make 2005 an outstanding year in the fight against MS. We will end the devastating effects of multiple sclerosis! Sincerely, Dave Perren Leon LeBuffe, PhD Chairman of the Board, 2004 President Southern California Chapter Programs and Services 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 second time in three years, the Chapter earned the national distinction of excellence - the 2005 Cavallo Award - recognizing outstanding work in servicing the diverse needs of the MS community throughout Los Angeles, Kern, Inyo, San Bernardino and Riverside counties. From the point of diagnosis and throughout life with the disease, the National MS Society, Southern California Chapter has offered over 10,000 people with MS and their families the power of knowledge, support for health & wellness, and tools for independence in living well with this disease. Power of Knowledge Our goal is to arm people living with MS with the latest information to help them successfully manage the disease and lead a fulfilling life. Toward that end, we held approximately 75 educational events this year in communities throughout the five- county area covering topics such as symptom management, communications, research updates and more. Over 4,500 people sought out the most current and accurate information and links to community resources from the information specialists at our toll-free MS Resource Center. Through continuing professional education programs the Chapter strives to educate and partner with wellness and healthcare professionals to enhance the access and quality of care available to people with MS. In addition, we partner with 11 leading MS Care Centers throughout Los Angeles and San Bernardino County to provide specialized and comprehensive treatment and disease management for Southern Californians. Support for Health & Wellness The Chapter recognizes that a diagnosis of MS should never prevent someone from living well and enjoying every opportunity to embrace all that life has to offer. In addition to offering the ongoing 80 adaptive exercise classes and wellness workshops, this year talented and dedicated volunteers and staff developed and presented new, innovative programs that support physical, emotional and spiritual well-being. 3 Chapter Programs & Services Laugh Out Loud: Our new therapeutic laughter workshops, have people laughing, giggling, chuckling and even cackling. These workshops, patterned after the Laughter Club movement, help people with MS, their families, children, caregivers and healthcare providers explore the benefits of therapeutic humor in managing the challenges of daily life with MS. Faith, Spirituality and Chronic Illness and Exploring Your Spiritual Self: These two new programs provided participants the opportunity to explore how spiritual practices can provide a greater level of self-awareness and play a role in managing and coping with MS. CogniFit - Keeping the Mind Moving represents the important concept that exercising the mind on a regular basis is important to maintaining good cognitive function. This 8-week training program, taught by a speech language pathologist, introduces participants to strategies that strengthen attention & focus, enhance memory and help develop practices that can be integrated into everyday living. Tools for Independence Despite the changes MS can bring, independence is possible. Our employment counseling services and popular 5-week program named Working But Worried helped 170 individuals address the critical issues around maintaining employment and finding a win-win approach to working with MS. A wide array of direct assistance programs provided 350 people over $130,000 of financial help for such services as respite care, rehabilitative therapies (Physical therapy, occupationaly therapy, speech therapy & counseling), chore services, crisis assistance, home modification, durable medical equipment, personal care and more. Commitment to a Continuum of Care For over seven years, the Chapter has been dedicated to addressing the continuum of care issues that face those whose MS progresses. In 2001, the Marilyn Hilton MS Achievement Center at UCLA initiated a day wellness program focused specifically on the needs of those living with MS. Since its launch, the Center has served as a model for the type of programming that can be brought to adult day health centers and skilled nursing facilities in communities nationwide. The Chapter has taken the best practices of the Center to places like Active Adult Day Care and Hillcrest Care Center in Long Beach to serve the needs of the MS participants and residents of these facilities. 4 Chapter Programs & Services This year the Chapter was fortunate to receive a generous $1 million, 6-year grant from the Flora L. Thornton Foundation to establish the Eric Small Centers for Optimal Living With MS. Modeled after the successful programs at the Marilyn Hilton MS Achievement Center at UCLA, this initiative represents a new collaborative partnership for the Society that is like none other in the country-bring together 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. University of Southern California, Casa Colina MS Care Center and Rancho Los Amigos Center for Rehabilitation join the Achievement Center in this unique partnership. Advocacy The Chapter continues the fight to protect the rights of people living with MS. Here are some of the issues we championed this year in conjunction with the other state Chapters in MS-CAN, the MS California Action Network: N Extended the sunset period on a prior bill (AB1661) until 2010 allowing a $500 tax credit to families where the primary caregiver is a family member. N Working with the state Olmstead Committee to ensure that the issues of the younger disabled population are addressed in the decisions for home and community based services. N Promoted and supported bill proposing Universal Health Care in California N Advocated for the preservation of current wages for IHSS workers to ensure support for the family caregiver. Hispanic/Latino Outreach Since 2001, as part of a national Hispanic/Latino Outreach Project, the Chapter has been reaching into the Latino MS communities of Los Angeles, San Bernardino, Riverside and Kern counties to identify issues that impact the knowledge and treatment of Hispanics living with MS. N To address the lack of culturally and

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