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Multiple sclerosis interrupts
the flow of information between the brain and the body and stops people from moving. Every hour in the United States, someone is newly diagnosed with MS, an unpredictable, often disabling disease of the central nervous system. Symptoms range 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 treatment are moving us closer to a world free of 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.
PROGRESS REPORT 2009
TABLE OF CONTENTS
MS stops people from moving. The National MS Society exists to make sure it doesn’t. We help each person address the challenges of living with MS. Last year alone, we devoted over $136 million to programs that enhanced more than 1 million lives. The Society also invested over $33.5 million to support 345 new and ongoing research projects. Locally, the Northern California Chapter provides programs and services designated to help the 87,500 people and families affected by MS in 40 Northern California counties move their lives forward. Nearly $12 million is spent on MS research in our area annually. We are people who want to do something about MS NOW. Learn more at www.MSconnection.org
PAGE 3 | We are a driving force of MS research, relentlessly pursuing prevention, treatment, and a cure. PAGE 4 | We address the challenges of each person whose life is affected by MS. PAGE 5 | We are moving politicians and legislation to champion the needs of people with MS through activism, advocacy and influence.
PROGRESS REPORT 2008 - 2009
PAGE 6 | We are moving to mobilize the millions of people who want to do something about MS now.
ADDITIONAL CONTENTS PAGE 7 | Fundraising Events PAGE 8 | Financial Information PAGE 9 | Board of Trustees PAGE 10 | Programs & Services Provided
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Members enjoy a yoga class from the chapter.
MS RESEARCH
We are a driving force of MS research, relentlessly pursuing prevention, treatment & a cure. The MS movement has been about moving others from the start. Sylvia Lawry’s very first act in creating the organization that would become the National MS Society was to reach out to the world via a classified ad in The New York Times. To this day, collaboration is at the heart of everything we do. This is especially true in research, where the Society has responded to scientists’ ever-deepening understanding of MS by creating ever-wider networks of cooperation.
The most dramatic example is the Nervous System Repair & Protection Initiative, a five-year grant funded by the Society’s Promise: 2010 campaign. The project is so big that it has not one but four principal investigators, as well as collaborators based at universities spread across 11 time zones in North America and Europe.
If it’s important to unite researchers from different countries and different labs, the same can be said of bridging the chasm that sometimes exists between the public and private sectors. Here, too, the Society is playing a vital role. The Society’s Fast Forward® subsidiary, which uses a venture-capital approach to speed the development of MS treatments, received 16 proposals, conducted complete assessments on four and reached agreement on its first investment that started in Fiscal Year 2009.
Our Promise: 2010 Nervous System Repair & Protection Initiative accomplished an important step forward when investigators successfully used human nervous system progenitor cells to myelinate brain and spinal cord nerve tissue in mice that are genetically incapable of making their own myelin. 13 new genes that predispose humans to MS were identified in large scale genetic screening, and a new genetics project was launched to catalog and validate all of the genes exerting significant effects on MS susceptibility. The Society funded 90 new projects, including research grants, Collaborative MS Research Centers and high-risk pilot research projects, and 34 new training fellowships for MS physicians and scientists.
The Society drafted federal legislation to create a National MS Registry which will, for the first time, collect national data on the prevalence, incidence, and demographics of MS in the United States. The Society funded eight clinical trials of new therapies, including estriol, the nerve-protecting agent riluzole, and a trial of cognitive rehabilitation strategies. The Society supported investigations on the potential roles played by sunlight, vitamin D and Epstein-Barr virus in the cause of MS. The Society held a collaborative meeting of investigators who run MS tissue and DNA banks to increase the number of donors and to disseminate these vital materials to the research community. JOIN THE MOVEMENT
PROGRESS REPORT 2008 - 2009
More Progress in Research:
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PROGRAMS & SERVICES
We address the challenges of each person whose life is affected by MS. The chapter reaches out and responds to individuals, families and communities living with MS. Educational Programming was provided throughout our entire chapter territory. 1,111 people living with MS and their loved ones participated in a variety of educational events focused on the following topics: Emerging Therapies
Independent Living
Being Newly Diagnosed
Updates on MS
Pain and Spasticity
Personal Fulfillment
Men’s Issues
Managing Fatigue
MS and the Workplace
Nutrition
Financial Planning
Wellness Programs: Over 100 ongoing specialized exercise classes in Pilates, yoga and aquatics were provided throughout Northern California, by instructors trained to teach people living with MS. Care Management Services were provided to over 30 individuals and families in Northern California, to assist with managing difficult issues and complex service planning. This support was provided through over $15,000 of care management funding and many hours of staff time.
PROGRESS REPORT 2008 - 2009
Emotional Support Programs were provided through Professional Counseling Groups, Self-Help Groups, and our Peer Support Program. These services were provided both in-person and on the telephone. In Fiscal Year 2009, the Northern California Chapter facilitated: •
8 professional led counseling groups
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Training for 20 new Self-Help Group Leaders, with a total of 54 Self-Help Groups throughout Northern California
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Over 100 clients participated in sessions with a life coach
Nearly $80,000 of Direct Financial Assistance was provided to individuals with MS and their families to assist with physical wellness programs, respite care, transportation, emergency living expenses, and durable medical equipment including wheelchairs and assistive technologies not covered by medical insurance.
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ACTIVISM
We are activists. Until a cure is found, people living with MS and their families face many challenges. We must pursue legislative progress and improved government programs to better meet those needs. We are moving politicians and legislation to champion the needs of people with MS through activism, advocacy and influence for: Increased MS research | Disability rights | Long-term care resources | Accessible, affordable insurance
MORE PROGRESS IN GOVERNMENT RELATIONS & ACTIVISM The Society is an active member in 16 national health care coalitions, connecting our volunteers to thousands of others.
The Congressionally Directed Medical Research Programs, administered by the Department of Defense, established a $5 million funding stream for MS research.
Stories in national media consistently linked the National MS Society and multiple sclerosis news by interviewing Society spokespeople, referring to Society programs or reporting on Society-sponsored events.
Membership in the Society’s grassroots activist movement rose by 135%. Members receive e-mail alerts when letters, telephone calls, or e-mail messages are needed to press for legislative action.
New Society Public Service Announcements received more than $12 million worth of free placements, a 25% increase over the previous year.
Change happens through MS activism. The National MS Society and MS activists nationwide relentlessly advocate every day for federal policies and government programs to benefit the lives of people with MS and their families. The MS California Action Network, MS Action Network and chapter’s Government Relations Committee advocate for research monies and health care rights, striving to promote public policy in the best interest of people with MS. Learn more at www.MSconnection.org
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PROGRESS REPORT 2008 - 2009
The Society’s volunteers and staff are using the National Health Care Reform Principles proactively with other organizations and advocacy efforts at the federal and state levels.
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ACTIVISM
What is MSCAN? The Multiple Sclerosis California Action Network MS-CAN is an advocacy coalition made up of the California Chapters of the National Multiple Sclerosis Society. MS-CAN was formed in order to facilitate coordinated, unified responses to government-related issues of statewide concern affecting individuals with MS and their families. Part of our mission is to make government officials and policy makers more aware of the needs of people living with MS. Networking with other disability groups and health agencies to achieve goals of mutual interest is an important element of our effort—one that allows us to share information and resources in ways that help advance the best interests of the MS Society membership.
PROGRESS REPORT 2008 - 2009
The Northern California Chapter was Instrumental in Passing Legislation:
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SB 486 (Simitian) Sharps Waste: Disposal - The 2009 top legislative priority for MS-CAN was passage of SB 486 by Senator Joe Simitian (D-Palo Alto) that requires each pharmaceutical manufacturer of sharps to educate consumers and to submit a plan for sharps disposal to the state’s Integrated Waste Management Board. The plan must describe how each manufacturer intends to assist with the state’s efforts for safe disposal of household sharps. Senator Simitian introduced SB 486 in response to concerns about inadequate sharps disposal options raised by an MS client in his district, Betty Lipkin. MS-CAN was a co-sponsor of SB 486 and worked collaboratively with the bill’s other co-sponsors, the County of Alameda and the California Sharps Coalition.
Following is a summary of two other MS-CAN priority bills that were also signed by the Governor and became law on January 1, 2010:
The success of SB 486 was due to the tremendous efforts made by so many MS-CAN volunteers and staff. Kudos to Ralph Cyr, Northern California GRC member, who testified before legislative committees; and Terry Farmer, Sacramento Government Relations Committee Chair, who made multiple visits to legislative offices in the State Capitol; and, to the many MS-CAN volunteers throughout the state who lobbied legislators in their districts, wrote letters to the Governor and contacted local officials. SB 486 was signed into law on January 1, 2010
AB 1269 (Brownley) Medi-Cal: Eligibility
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AB 144 (Ma) Vehicles: Distinguishing Placards and Special License Plates AB 144 allows local authorities the option to punish disabled parking placard abuse as a parking violation. This allows enforcement through the citation of a vehicle with a parking ticket, rather than the misdemeanor arrest of a person, as is currently the law. This would make such violations simpler to enforce.
AB 1269 revises eligibility for the California Working Disabled Program so more disabled individuals can join the workforce.
VOLUNTEERISM
We mobilize the talents and resources of the millions of people who want to do something about MS. The National MS Society embraces, values, and
recognizes every contribution. With the help of volunteers, we stretch our donor dollar and build a stronger
organization. We partner with volunteers every day, at every level, and with every project. We welcome volunteers with diverse talents and backgrounds. We will work with their availability and lifestyle, and provide growth and development at all points of service. Chapter fiscal year 2009 achievements in mobilizing people who want to help: Volunteers gave 12,477 hours in the following areas: special events, in-office support, self-help group leaders and advocacy. Some 2,400 people received support by attending one of our 52 self-help groups (led by 83 volunteers).
12 MS Ambassadors shared a personal story to educate and inspire event participants and donors.
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PROGRESS REPORT 2008 - 2009
The local MS Action Alert Network was activated this year and volunteers donated 1,550 hours.
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We engaged more than 20,000 walkers, cyclists or other event participants, who advanced MS awareness and raised vital funds.
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We will raise a total of $1.25 billion by the end of 2010. Bike MS: 1700 people cycled and raised
$1.8 million at the two-day, 150 mile Bike MS: Waves to Wine Ride 2009.
Walk MS: At 11 walk sites across Northern California, nearly 6700 people raised $1.15 million dollars.
Dinner of Champions: The 2009
Dinner of Champions event raised over $208,000 for MS research, programs, and services. PROGRESS REPORT 2008 - 2009
Direct Giving: Nearly $80,000 was
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distributed to 134 people affected by MS for medical equipment, home modifications, scholarships and other MS-generated needs.
DuskBusters: 300 people participated
in a 5K Run/ 2-Mile Walk in Golden Gate Park and raised almost $35,000 to fund research, programs and services.
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Officers
Thomas M. Galizia, Chair Deloitte Consulting
Angela E. Lai, Secretary Wells Fargo Bank
David Larson, Treasurer Piedmont Grocery
David Hartman, President
Board Members
REVENUE • Special Events: 58% • Membership & Contributions: 17% • Other Income: 12%
Laura Black, Audit Chair Needham & Company
H. Penny Knuff Fiduciary Trust International of California
C. Budd Colby Colby Biomedical Consultants
David Mauldin
Elizabeth Crabtree-Hartman, MD UCSF MS Center, Department of Neurology Anthony DeLizza, Program Co-Chair First Light, LLC
• Legacies & Bequests: 13%
Michelle Dennedy Sun Microsystems, Inc.
EXPENSES
Matt Frinzi Powervision, Inc.
• Local Programs & Services: 54% • Fundraising: 15% • Management & General: 4% • Research & National Programs: 27%
Doug Richardson, Program Co- Chair John A. Schafer, MD Mercy Medical Group John N. Staples, III Evanston Partners Dan Stokes JStokes Agency
Emeritus Warren Berl
Douglas S. Goodin, MD UCSF MS Center David R. Hultman, Governance Chair Davidson Investment Advisors H. Penny Knuff Fiduciary Trust International of California
David Korn Fillmore Marks Gary Ryness The Ryness Company
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PROGRESS REPORT 2008 - 2009
ABOUT OUR FUNDS
BOARD OF TRUSTEES
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PROGRAMS AND SERVICES
2009 PROGRAMS & SERVICES PROVIDED A sample of some of the local programs and services provided each month: OCTOBER
FEBRUARY
JUNE
• Rx for Communication
• Couples Relationship Workshop
• The Causes of MS: What We Know Now
• First MS Symptoms: What do they tell us now for later
• Live Life Now: Connecting Through Clay
• Questions & Answers about MS
• Dealing with Pain and Spasticity
NOVEMBER • Teleconference: Riding the Emotional Wave of MS • 8 Week Counseling Groups
DECEMBER
MARCH • MS Awareness Week • Public Policy Conference • MS Research Symposium
APRIL • Emotional Wellness Teleseries
JULY • MS in the Workplace • CAN DO
AUGUST • Phone Therapy Support Group • Eating Well with MS
• Bay Area Counseling Group
• MS California Neuroalliance Conference
• Understanding and Managing Fatigue in MS
MAY
SEPTEMBER
• Men’s Day
• MS Symptom Management for Women
• Family Whitewater Rafting
• Taking Control of Life Decisions
• Home Smart Home Expo
• Strike Out MS Night at the Sacramento Rivercats Baseball Game
• MS Book Club
JANUARY • Emerging Therapies in MS • Meds & MS • Men’s Day
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PROGRESS REPORT 2008 - 2009
• Sky Dive for Free
• Making Laughter, Loving Life
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Early and ongoing treatment with an FDA-approved therapy can make a difference for people with multiple sclerosis. Learn about your options by talking to your health care professional and contacting the National MS Society at www.nationalMSsociety.org or 1-800-344-4867 (1-800-FIGHT-MS).
Thank you to our generous and talented volunteer photographers: Brett McNair, Keith Wick, Curt Guttierez, Kalia Hotchkiss, Kayla Davis, Ross Braver, Jay Pachura, Gretchen Bell, Miles McClennan, Kenneth Yu, Mark Baldassari, and more! Northern California Chapter Offices 1700 Owens Street Suite 190, San Francisco, CA 94158 4225 Northgate Blvd, Suite 4 Sacramento, CA 95834 2589 Scott Blvd Santa Clara, CA 95050 1-800-344-4867 www.MSconnection.org www.facebook.com/MSnortherncal