2011 Annual Progress Report NATIONAL MULTIPLE SCLEROSIS SOCIETY Pacific South Coast Chapter
We are leaders in the worldwide MS movement, mobilizing millions of people to do something about MS now. 2
•
2011 Progress Report
About Multiple Sclerosis Multiple sclerosis, an unpredictable, often disabling disease of the central nervous system, interrupts the flow of information within the brain, and between the brain and body. Every hour in the United States, someone is newly diagnosed with the disease. 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 at least two to three times more women than men being diagnosed with the disease. MS affects more than 400,000 people in the U.S. and over 2.1 million worldwide.
About the National MS Society
MS stops people from moving. The National MS Society exists to make sure it doesn’t. The Society addresses the challenges of each person affected by MS by funding cutting-edge research, driving change through advocacy, facilitating professional education, collaborating with MS organizations around the world, and providing programs and services designed to help people with MS and their families move forward with their lives. In 2010 alone, through its national office and 50-state network of chapters, the Society devoted $159 million to programs and services that assisted more than one million people. To move us closer to a world free of MS, the Society also invested $37 million to support 325 new and ongoing research projects around the world. The Society is dedicated to achieving a world free of MS. Join the movement at nationalMSsociety.org.
We’re Unstoppable
•
1
MS stops people from moving. We exist to make sure it doesn’t.
22
Progress Report 2011 Progress Report ••2011
We’re unstoppable! This has truly been an exciting year. In 2010, the National MS Society kept the promise we made in 2005 to raise $32 million over five years to support exciting MS research initiatives. Researchers have made tremendous progress toward stopping MS in its tracks, restoring function that’s been lost and ending MS forever. We’ve engaged more volunteers and MS activists than ever before. We’ve expanded prorgrams and services and we continue to focus energy on events that raise money to support research as well as everyone in our chapter territory affected by multiple sclerosis. The Walk MS Physician’s Challenge grew tremendously and the Bike MS Bay to Bay Tour has reached new levels of excitement. We collaborated with the other California Chapters to produce our second annual MS research forum. Thanks to our generous donors and participants, we’ve been able to manage through this challenging economic time. Most importantly, THANK YOU for being an integral part of our movement to create a world free of multiple sclerosis! MOST SINCERELY, Richard V. Israel, Chapter President
We’re Unstoppable
•
3
A movement by and for people with MS. Helping move more lives forward than ever before.
24
Progress Report 2011 Progress Report ••2011
Together, we can end MS. My role as chairman of the Pacific South Coast Chapter’s Board of Trustees officially began in 2010, but like many of you, my commitment to the organization, and to people living with MS, has been long-standing. This was another significant year in creating a world free of MS. It began with thousands of people across the nation sharing what they need, their hopes for the future and their experience living with MS, which informed the development of the Society’s 2011-2015 Strategic Response. We hear you loud and clear: we will do more and we will do it now. o We will fuel more research, with more focus on research into progressive MS. o We will better address the needs of people severely impacted by MS. o We will grow the talent pipeline of researchers and clinicians. Now that we have a plan, we are each instruments to drive it forward. Let’s continue to move together towards our ultimate goal: a world free of multiple sclerosis. SINCERELY, Chris Serocke, Chair, Board of Trustees
We’re Unstoppable
•
5
We are a driving force of MS research, relentlessly pursuing prevention, treatment, and a cure.
26
Progress Report 2011 Progress Report ••2011
2011 was a historic year for MS research, with exciting progress made in nearly every field of MS research. The Society led the way.
READ MORE ABOUT PROGRESS MADE THIS YEAR.
IN 2010-2011, WE: o
Launched a Rapid Response Fund to follow urgent research leads, immediately using this support to investigate the link between chronic cerebrospinal venous insufficiency (CCSVI) and MS.
o
Funded more than 325 new and ongoing research projects around the globe, including important new projects to discover risk factors that lead to MS progression, research on vitamin D and estrogen, and tests of a new device to improve walking ability.
o
Gathered more than 80 new MS research trainees and specialists at the second annual Tykeson Fellows Conference.
o
The chapter collaborated with the Southern California and Northern California chapters to host the 2nd Annual MS Research Forum at UCSF in August. Over 82 Society funded researchers were present to share ideas and current research strides taking place.
o
Funded exciting new research by 10 companies through our Fast Forward initiative to facilitate the commercial development of new therapies from the laboratory to people with MS, raising nearly $9 million to support this cutting-edge effort.
We’re Unstoppable
•
7
We address the challenges of each person whose life is affected by MS.
28
Progress Report 2011 Progress Report ••2011
This year, we provided in-person education to over 30,000 people in Orange, San Diego and Imperial counties. Over 7,200 people took part in a chapter program, education event, wellness class or training opportunity. SOME NOTABLE HIGHLIGHTS: o
We fielded over 4,600 local requests for information and/or referral.
o
Four issues of the MSConnection, our quarterly newsletter, were sent to 64,000 total recipients and more than 150,000 email recipients.
o
Over $273,000 in direct assistance was provided for 880 unique requests to people for grants for independence, modifications for homes, hand controls for cars, utility relief during the hot summer months, emergency assistance to avoid homelessness, transportation assistance, equipment assistance, respite care and chore services.
o
Seven physicians started Walk MS teams, recruiting a total of 200 walkers and raising over $30,000 for the 2nd Physician’s Challenge.
o
The chapter’s Clinical Advisory Committee launched a new online toolkit, Professional Connection email newsletter and a new resource guide: Project Access for doctors to assist people with MS facing insurance challenges.
o
The chapter trained 51 mental health professionals by offering a continuing education program regarding mental health and MS.
Learn more about the programs & services we provide at MSpacific.org
We’re Unstoppable
•
9
We mobilize the talents and resources of the millions of people who want to do something about MS NOW.
2 • •2011 Progress Report 10 2011 Progress Report
None of the progress made in 2010/2011 would have been possible without the hard work and resourcefulness of the chapter’s volunteers. THIS PAST FISCAL YEAR: o
One-hundred-seventeen individuals served as leadership volunteers, leading over 5,300 individuals serving as volunteers.
o
Thiry-two self-help groups convened monthly and welcomed over 3,800 members.
o
The local MS Action Alert Network was activated this year reaching out to more than 1,900 volunteer activists who are telling their stories to our local public officials.
o
Twenty-four MS Ambassadors shared a personal story at over 35 events to educate and inspire event participants and mambers of the wider community.
o
We engaged over 15,000 walkers, cyclists or other event participants who advanced MS awareness and raised vital funds.
o
A volunteer committee of men living with MS launched Boys Night Out, a social program for men living with MS and male caregivers. Four gatherings were held this past year that welcomed more then 100 men.
o
75 Angel volunteers provided over 1,800 friendly visits to people with MS who rarely leave the home or live in long-term care facilities.
We’re Unstoppable
•
11
We mobilize the talents and resources of the millions of people who want to do something about MS NOW.
2 • •2011 Progress Report 12 2011 Progress Report
Economic challenges or not, the Society’s donors and fundraisers gave generously to support Society programs and services and research to find the cause and cure of MS. o
Bike MS: 2,401 people cycled and raised $2,346,286 million at the one or two-day, 15-, 30-, 100- or 150-mile Bike MS Bay to Bay Tour sponsored by Land Rover Miramar. The Tour was also voted the “Best Cycling Event” by readers of Competitor magazine for the 5th year.
o
MS Dinner Auction: Over 600 guests helped raise $453,000 at the MS Dinner Auction held at the Loews Coronado Bay Resort.
o
Walk MS: ANearly 12,000 people on 277 teams raised $1.6 million at the San Diego Country Credit Union Walk MS in University of California, Irvine; LEGOLAND® California in Carlsbad; and NTC Park in San Diego.
o
MS Golf Invitational: At the La Jolla Country Club, $160,000 was raised by 120 players. Coach Norv Turner of the San Diego Chargers acted as the chair for the event.
o
Race to Stop MS Endurance Training Program: 20 Triathletes and marathoners raised nearly $30,000 while challenging themselves to complete an endurance event.
o
Challenge Walk MS: In September 2011, 217 Walkers plus 90 Super Crew and Crew members raised $969,811.
o
Leadership Giving: Year round, thousands of donors give outright donations to the Chapter through; workplace giving, planned gifts through their estates and foundation giving totaling more than $1,070,00 in support. We’re Unstoppable
•
13
We are activists.
214 • • 2011 Progress Report 2011 Progress Report
We are raising awareness of MS through MS Awareness Week and helping to shape, in federal and state legislatures, public policy that affects people with MS. Everyone in the movement has a stake in the Society’s activism efforts. THIS YEAR, SOCIETY ACTIVISTS: o
Secured an additional $4.5 million in MS research funding through the Congressionally Directed Medical Research Programs, bringing our total through this funding source to nearly $12 million in three short years.
o Welcomed 25 senators and 125 representatives to our Congressional MS Caucus, bringing the total number of federal lawmakers participating in this bipartisan caucus in 2010 to 150. o Rallied to get federal legislation drafted to establish new adult day programs and to enhance the services of those that already exist. o Pushed for the passage of the National Neurological Disease Surveillance System act and continued efforts to increase Lifespan Respite resources. o Gathered in 23 state capitals to shape public policies to better serve those affected by MS and increase awareness among lawmakers of the effects of MS.
We’re Unstoppable
•
15
A vision for the future – with the hopes and concerns of people living with MS at the center.
216• • 2011 Progress ReportReport 2011 Progress
A bold & urgent plan for the next five years In 2010, the Society unanimously endorsed a five-year strategic roadmap, The STRATEGIC RESPONSE: 2011-2015. More than an organizational plan, it strives to be a response to the brutal facts of living with MS and identifies what must be done, not only at the Society, but globally, to achieve a world free of MS. People and organizations from coast to coast and around the world informed and guided our work to develop the Strategic Response: 2011-2015. Nearly 10,000 individuals — including over 7,000 people living with MS — provided clear expectations about what must be accomplished to change the lives of those with MS by the year 2015. Participants included people living with all forms of MS, as well as health-care professionals, researchers, and scientists, elected officials, activists, donors and event participants, corporate partners, volunteers and more. FIVE KEY STRATEGIC GOALS PROVIDE THE FOUNDATION: Click here for a downloadable copy of the complete Strategic Response: 2011-2015.
o We are a driving force of MS research and treatment to stop disease progression, restore function, and end MS forever. o We develop, deliver and leverage resources to enhance care for people with MS and quality of life for those affected by the disease. o We are leaders in the worldwide MS movement, mobilizing millions of people to do something about MS now. o We are activists. o We develop and align human, business and financial resources to achieve breakthrough results.
We’re Unstoppable
•
17
Fiscal Year 2010-2011 Revenue Membership & Contributions
Other Income Legacies & Bequests
Special Events
TOTAL REVENUE: $5,344,013 Special Events 80% Legacies & Bequests 2% Other Income 3% Membership & Contributions 15%
18
•
2011 Progress Report
Fiscal Year 2010-2011 Expenses Client & Professional Services
Fundraising
Management
Research & National
TOTAL EXPENSES: $5,782,611 Fundraising 16% Management & General 12% Client & Professional Services 48% Research & National 35%
We’re Unstoppable
•
19
Board of Trustees EXECUTIVE COMMITTEE
Chris Serocke Barry Clarkson Cynthia Perazzo Karen Sedgwick Tyler Mark Malbon Tim Holl
TRUSTEES
Ellie Barnard Dawn Beattie Phil Bresnick Sam Brusco Jody Corey-Bloom Art Flippin Cecelia Garr Franklyn Gottbetter Jayne Hancock Rick Hausman Charlotte Hayes William Hornstein Zuzana Hostomska Selina Hudgins Greg Joumas Tom Karlo Jim Kesaris Nan Luke Dac McAllister Penny Martin Barbara Maurais John G. Most Lizbeth Najm
220 ••2011 Progress Report 2011 Progress Report
ADVISORY
John Platon Justin Reckers Shashona Reynolds Kimberly Roush Jerry Sanders Suzanne Schulman Norv Turner Eric Vann Diane Ward Stephen Zamucen
EMERITUS
Pat Brown Bob Clark Patrick Connors Richard Hausman Robert Melucci Michael Smoger
Bill Bisch James Brown Gina Cunningham Daley Margery Dorsey Pam Fair Lewis Finkelstein Ronald Fowler Francie Mortenson Thomas Page Beth Philion Nancy Rossi Jerry Sweeney Blake Von Sprecken Carol Webster Mrs. Alice Zamboni
We’re Unstoppable
•
21
2010-2011 Calendar of Events OCTOBER 2 2 7 16-17
CAN DO MS – Del Mar CAN DO MS – Santa Ana Jobtoberfest Job Fair – Balboa Park Bike MS Bay to Bay Tour sponsored by Land Rover Miramar
NOVEMBER-NATIONAL FAMILY CAREGIVER MONTH 6 Thrive With MS-Kaiser Permanente Symposium – Carlsbad 13 Moving Forward: Program for the Newly Diagnosed – Santa Ana 20 MS Dinner Auction 22 & 23 Turkey Delivery Day DECEMBER 9 19
Boy’s Night Out- Carlsbad Sheraton Sycuan Annual Family Holiday Party – San Diego
JANUARY 22
Annual Meeting of the Members – Dana Point
FEBRUARY 2 3 17 24 26 Ongoing
CEOs Against MS Breakfast – Costa Mesa CEOs Against MS Breakfast – San Diego Regional Teleconference: Humor and Stress Social Security Education Day – Orange County Moving Forward: Program for the Newly Diagnosed – San Diego When MS Progresses-Costa Mesa Regional Teleconference: Accessibility in the Community
MARCH 1-3 4 8 10
Public Policy Conference Golden Circle Donor Reception Regional Teleconference: Energy Management Boys Night Out - San Clemente
222 ••2011 Progress Report 2011 Progress Report
MARCH (CONTINUED) 14 MS Awareness Week 22 Regional Teleconference: Research 24 UCSD MS Symposium-San Diego Ongoing When MS Progresses-Costa Mesa APRIL 9 30
Walk MS-Irvine Walk MS-San Diego
MAY 1 2 11 14 16 21 25
Walk MS-Carlsbad Legoland MS Invitational Golf Tournament Imperial Valley Education Day – El Centro Day at the Bay- Mission Bay State Advocacy Conference Moving Forward: Program for the Newly Diagnosed – Orange County World MS Day
JUNE 16 Ongoing Ongoing Ongoing
Boy’s Night Out – Carlsbad 8 week Pro-led Group: First Steps/ Newly Diagnosed (OC and SD) 8 week Pro-led Group: When MS Progresses (OC and SD) 8 week Pro-led Group: Active Adults Living with MS (OC and SD)
JULY 16 23
MS Research Symposium-Irvine Caregiver Education Day – San Diego
AUGUST 5-6 10 13 17
California MS Research Forum – San Francisco Social Security Education Day – San Diego Moving Forward: Program for the Newly Diagnosed – San Diego Mental Health Training
SEPTEMBER 16-18 23-25
Women’s Wellness Weekend Challenge Walk MS
We’re Unstoppable
•
23
Thank you to our generous supporters & sponsors Abbott Nutrition Ability Center Ace Relocation Systems Acorda Therapeutics Agel Albertsons/So Fresh Produce Co. Allie’s Party Rentals AM Strategies American Assets Amino Vital AMN Healthcare Avanir Pharmaceuticals, Inc. Barefoot Wine Barney’s Premium Foods Bear Naked Beckman Coulter Foundation BikeFit Biogen Idec, Inc. BioFreeze BJ’s Restaurant & Brewhouse Blistex Brutoco Engineering & Construction California Chips California Sulpher Cape Cod CARES Cascadian Farms CBS Outdoor Chamois Butt’r 224 ••2011 Progress Report 2011 Progress Report
Chick-fil-A City of San Marcos Clear Channel Outdoor Clif Bar CO’s Traffic Control Coca Cola Collins Plumbing Competitor Magazine Continental Airlines Courtyard Marriott Carlsbad CR&R Creative Flavor Concepts Crystal Geyser Curves Diesel Stix The Disneyland Resort DJ’s 4 U Dole Bananas Don Francisco’s Coffee Doubletree Santa Ana Earnest Eats EAS Myoplex East County Herald Newspaper EMD Serono, Inc. Enterprise Erin Baker’s Wholesome Baked Goods Evans Tires FedEx Felt Bicycles Fitness Chiropractic
Fitness Quest 10 Flower Fields Fluid Fly by Night Frazee Paint Frito-Lay FRS G & C Equipment Corporation Geico General Mills Genzyme GMI Security Golden Eagle Insurance Golden Spoon Goody Hansens Beverage Company HEALTHSOUTH Tustin Rehabilitation Hospital Heritage Foods/Kerns Necter Higher Level Sound Homestead Sheet Metal Jelly Belly Sport Beans Jimbo’s Kaiser Permanente Kaplan College Karl Strauss Kiss My Face Sunscreen KOST 103.5 KPBS KPMG KSL Resorts
KTLA KxKy 96.5 LA Times La Quinta Resort & Spa Land Rover Miramar Langer’s Juice Company, Inc. Larson Lighting LEGOLAND® California Leo Hamel Fine Jewelers Lexus San Diego Loews Coronado Bay Resort MARC Medline MedMedia Melissa’s/World Variety Produce Mighty Ducks of Anaheim Mobile Music Plus MOST Branding & Advertising Motor Tabs MSC Software Natures Gate Sunscreen NBC Los Angeles NBC San Diego NetApp New Country Radio 95.7 OC Corps Orange County Public Libraries Orange County Unified School District Outdoor Insight Paceline Products Pacific Ambulance Pacific Wealth Management Pamela Sailor
Papa John’s Pizza Pearl Izumi Pedro’s Tacos PennySaver Pepsi Performance Healthcare Inc. Pfizer Postal Annex Prescriptions Solutions Pharmacy Presidio Sentinel Pretzel Crisps Provide Commerce Pure ProteinMET- Rx & Worldwide Sports Nutrition Qualcomm Questcor Rally’s Randy Albers Raphael’s Party Rentals Redfearn & Associates Rehab United REI Republic Waste Roberto’s Very Mexican Food Rock N’ Road Cyclery San Diego City Libraries San Diego City School District San Diego County Credit Union SanDiego.com Screaming Daily Deals SDG&E/Energy for Others Sherry’s Gotta Dance Shoebacca Side Jobz
Smokehouse Catering Sophie 103.7 Souplantation Spanky’s Sports Authority Sullivan Moving & Storage Sycuan Casino Target TEVA The Breakaways Torrey Pines Bank THE UPS STORE Trader Joes UltraStar Cinemas Unified Port of San Diego Urban Corps of San Diego County USA King’s Crossing ViaSat Vitalyte Volunteer Clowns of Orange County VTDS Inc. / ProSonix Walgreens Wal-Mart Waste Management Wawanesa Insurance Web Advanced Wells Fargo Western Pistachios Wesfield Plaza Camino Real WIN Therapy Yikes ID! Zico Coconut Water
We’re Unstoppable
•
25