National National Multiple Sclerosis Sclerosis Multiple Society Society Northern Northern California Chapter Chapter
WE ARE PEOPLE WHO WANT TO DO SOMETHING ABOUT MS NOW.
2014
NORTHERN CALIFORNIA CHAPTER ANNUAL REPORT OCTOBER 1, 2013 - SEPTEMBER 30, 2014
A BA N NN O T ER H YE E AR R
WELCOME! We are very pleased to share that 2014 was an outstanding year for your Northern California Chapter of the National Multiple Sclerosis (MS) Society marked by record breaking revenue and funding of MS research. This success, combined with diligent financial stewardship, allowed us to make the largest contribution to Society research in our chapter’s history—$3.2 million—which drives advancements that will stop MS, restore lost function and end MS forever.
2014
NORTHERN CALIFORNIA CHAPTER ANNUAL REPORT Connecting exceptional leaders in the MS movement! On behalf of the Northern California Chapter, we are proud to present the many achievements of the last year which reflect the steadfast commitment of a collective of passionate individuals and organizations that are working together and building connections to change the world for people with MS. The women and men that face challenges of living with MS with humor, determination and hope continually inspire us. We are equally inspired by the generosity of our donors, whose gifts support Chapter programs and services that improve lives today and the promising research that will one day create a world free of MS.
within our communities in the coming year. Our Board of Trustees, donors, volunteers, sponsors, partners, and staff were all instrumental in driving the remarkable achievements shared in this report. We thank each of you for your commitment and focused energy which continues to fuel our collective impact—ensuring people affected by MS live their best lives. With appreciation for you as our partner, Janelle Del Carlo, Chapter President
We are inspired by research advancements that continue to yield more treatments for relapsing MS and remain steadfast in our support of expanding knowledge and accelerating efforts to address progressive MS. We remain resolute. We are well positioned to increase support and connections and optimize opportunities
FUELING IMPACT 1
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ONLINE & MOBILE GET SOCIAL Join our social family! We can be found in a number of places: youtube.com/MSnortherncal facebook.com/MSnortherncal Share your story with your friends, family and colleagues. Use the hashtag #MSnorcal on Facebook, Twitter, Instagram and Pinterest to share your experience.
GET ONLINE Connect with others affected by MS at MSconnection.org or visit the chapter’s website to learn about upcoming programs and events at nationalMSsociety.org/CAN.
GET INVOLVED Connect with us! As your Chapter President, I am interested in hearing your connections and ideas. Please let me know your thoughts -- I’m here. Janelle Del Carlo janelle.delcarlo@nmss.org
WHAT’S
INSIDE Research
04
Programs & Services 06 Advocacy 08 Fundraising Events 10 Volunteer Engagement 12 Financials 14 Board of Trustees 15 Golden Circle 16
FUELING IMPACT 3
G N I T H A C R S E R S L A E E E C R C S A E G
O R R P
WE ARE A DRIVING FORCE OF MS RESEARCH & TREATMENT TO STOP DISEASE PROGRESSION, RESTORE FUNCTION, AND END MS FOREVER. 4 2014 ANNUAL REPORT
The Northern California Chapter made its largest
• A clinical trial showed strong evidence that a specific
research contribution ever -- $3.2 million toward
type of memory training improves learning in people
Society research, funding 380 projects worldwide.
with MS and benefits other aspects of quality of life.
Northern California is home to XX of these promising
Additionally, a pilot study revealed that clinical and
research projects.
MRI improvements were maintained six months after training ended.
STOPPING MS IN ITS TRACKS
• In a preliminary study of a salsa dance program for people with MS, researchers found improvements in
• A National MS Society-funded team shed new light
gait and balance even three months after the 4-week
on immune cells known as macrophages, discovering
program ended. The Society is now funding a larger,
a way to tell the difference between good and bad
longer study that may lead to the use of dance as
types of these immune cells in mice with an MS-like
physical therapy for MS.
disease. This research opens up possibilities for therapies that target bad cells and spare good cells. • The U.S. Food and Drug Administration approved Plegridy (peginterferon beta-1a, Biogen) and Lemtrada (alemtuzumab, Genzyme, a Sanofi Company) for people with relapsing forms of MS. This means there are now 12 disease-modifying treatment options for
• The Society convened a Wellness Strategy Meeting with leaders in the fields of diet, exercise and psychology, including individuals who also directly live with MS, to identify gaps in knowledge and programming and to map out next steps for how these gaps might best be addressed.
those with the most common form of MS. • Researchers in the U.K. found that for every year that
ENDING MS FOREVER
passed after a person with MS stopped smoking, the risk for progression was reduced by as much as five percent.
• In studies involving over 80,000 people, the International MS Genetics Consortium identified more than 159 genetic variations related to MS.
RESTORING WHAT’S BEEN LOST
• Researchers in Sweden and California showed that adolescent obesity increased the risk for MS, and
A number of potential MS therapies that hold the
that this risk increased substantially in those with
possibility of myelin repair moved forward in clinical
specific immune genes.
trials, including an approach that tested the ability of an individual’s own mesenchymal stem cells to
• Investigators found that those who reported taking
inhibit immune mechanisms and augment intrinsic
cod liver oil at ages 13-18 had nearly half the risk of
tissue repair processes when infused into the veins
developing MS compared to those who never took
of people with relapsing forms of MS.
cod liver oil or took it at other ages.
In addition, there were positive results from a number of lifestyle and wellness-related studies, as follows:
FUELING IMPACT 5
SS M E A C I R V G R E O S R D P N A
WE DEVELOP, DELIVER AND LEVERAGE RESOURCES TO ENHANCE CARE FOR PEOPLE WITH MS AND QUALITY OF LIFE FOR ALL THOSE AFFECTED BY THE DISEASE. 6 2014 ANNUAL REPORT
THE CHAPTER PROVIDED TO THE COMMUNITY A WIDE RANGE OF RESOURCES AND CONNECTIONS TO ENSURE NO ONE FACES MS ALONE. INFORMATION & REFERRALS
SELF-HELP & SUPPORT GROUPS
Last year in Northern California, 1302 unique
Connecting with others with similar life experiences
individuals
answers through the MS
is powerful for positive personal change. In Northern
Navigator® program. The Society’s MS Navigator®
California people with MS have the opportunity to
program provides people with MS answers to
connect with each other at one of our 52 Self-Help
questions and access to information about available
Groups. In 2014, 1145 individuals with MS found
options. MS Navigators are partners – they can
support, education and resources at a group in their
spend time problem solving, create plans for making
local community.
found
critical decisions, deal with crises and can help people affected by MS find what they need to maintain their independence. Whatever the issue, an MS Navigator can help – just in time.
ONE TO ONE SERVICE Through the Chapter’s Care Management programs, support is provided to individuals with MS and their families who are experiencing serious emotional,
EDUCATION & WELLNESS 3,927
members
participated
physical and/or financial challenges. 49 individuals in
over
100
and families received the highest level of support
educational and wellness programs in 2014. The
from a knowledgeable and compassionate social
Society provides a variety of education programs on
worker who worked with them to determine needs,
the most up-to-date and relevant information about
then create and implement a personalized plan.
MS. Whether it’s learning how to apply meaningful communication techniques with a loved one, gaining a better understanding of what the science is behind the latest research or simply brushing up on the latest
FINANCIAL ASSISTANCE
therapies – we have something for everyone.
The cost of living with MS can be a tremendous stress
We provide in-depth financial counseling and education
The financial assistance program provides short-term
services; guidance, understanding and evaluation of
financial assistance that supports independence,
health care coverage options and rights; as well as
safety, health and quality of life. In 2014, the Chapter
access to professionals who can guide people living
provided $100,067.77 of financial assistance
with MS who need help applying for SSDI for the first
and leveraged an additional $42,073 from other
time, or appealing a denial later in the process – all
community resources. In total, we supported 210
free of charge! In 2014, 106 individuals received
individuals with 258 financial requests.
on both the person with MS, as well as their families.
employment and benefits counseling from our Benefits and Employment Team.
FUELING IMPACT 7
G N I E T G A N C A O H V C D A OR F WE ARE ACTIVISTS. 8 2014 ANNUAL REPORT
MS Activists Celebrate Unprecedented Success In Both Washington D.C. and Sacramento Letter writing and telephone calls among our 5,000
•
Passage of CA State Senate Bill 964, which
Action Alert members in Northern California and
increases the Department of Managed Health
11,000 statewide resulted in a record 105 in-person
Care’s (DMHC) oversight of health plans in
visits with lawmakers. This constituted our largest
regards to compliance with timely access to
mobilization effort in our Chapter’s history of
care and provider network adequacy standards.
advocacy. • Our 2014 advocacy results include:
Enactment of our number one legislative priority, Senate Bill 1052, which requires insurers and health plans to post their drug formularies
•
Successful advocacy in California and throughout
on their websites and update the postings within
the country that resulted in the inclusion
specified time periods of making a change in the
of the Advancing Research for Neurological
drug formulary.
Diseases Act in the 21 Century Cures Initiative. st
•
Protection of MS funding priorities including a $150 million increase for the National Institutes of Health, a House of Representatives-approved two-fold increase for the MS Congressionally Directed Medical Research Program that was lowered to flat funding of $5 million, and $2.36 million for the Lifespan Respite Care Program.
•
GainedimportantregulationswithintheAffordable Care Act, including stronger transparency requirements for Qualified Health Plans, more detailed information about covered benefits, and updated information about network providers.
FUELING IMPACT 9
G N I S I A R D S T N N U F VE E WE DEVELOP AND ALIGN BUSINESS AND FINANCIAL RESOURCES TO ACHIEVE BREAKTHROUGH RESULTS. 10 2014 ANNUAL REPORT
Everyone who wants to do something about MS can fuel progress. Northern California donors and fundraisers gave generously to support Society programs and services as well as research to find the cause and cure for MS.
FUNDRAISING HIGHLIGHTS Over 2,300 people cycled and raised over $2.67 million at Bike MS: Waves to Wine. The beautiful route took cyclists on a one or two-day, 40 - 175 mile journey from San Francisco to Sonoma County. Bike MS once again broke an all-time fundraising record for the second year in a row. Over 7,000 participants raised over $1.6 million across 12 Walk MS sites throughout Northern California. The Society’s largest program brought together our MS communities to show how powerful are connections can be when we come together. The inaugural MuckFest MS San Francisco brought muck and laughs to the Solano County Fairgrounds, raising over $150,000 with over 1,500 participants. Muckers braved a muddy 5K obstacle course, and even got some media attention as contestants from the 2014 season of ABC’s The Bachelor took on the course for a group date. The annual DuskBuster 5K Happy Hour Run/ Walk was a great success, raising over $44,000 and attracting 200 participants. Participants enjoyed a 5K run or walk through Golden Gate Park, followed by a happy hour celebration. Do It Yourself (DIY) Fundraising brought spectacular new events to the chapter, raising over $785,000. Events included CrushMS, the NorCal Equestrian Challenge for MS, and many more.
MISSION POSSIBLE The Mission Possible Club is committed to the cause, care, and cure for MS. They have given or raised $10,000 or more through Special Events to impact the lives of people living with MS. Perry Ann Jeveli -- $62,700 Janine Vanier -- $56,850 Christopher Hunsberger -- $41,305 Biogen -- $50,000 Robert Cima -- $36,158 Kate Aks -- $21,355 Salesforce.com Foundation -- $20,000 Artie DelNegro -- $18,285 Navid Mansourian -- $16,553 Tom Galizia -- $16,166 Crush MS -- $16,055 Steve Apperson -- $15,795 Jay Thayer -- $15,790 Cruisin’ with Susan -- $15,000 Questcor Pharmaceuticals, Inc. -- $15,000 Wells Fargo Bank, N.A. -- $15,000 Steven Weber -- $14,865 Terry Rossman MS Golf Experience -- $14,400 Jon Richards -- $13,220 Mindy Zuckerman -- $13,100 Daniel Siegel -- $12,100 Jim Forni -- $11,944 Robert Wellner -- $11,880 Matthew Zises -- $11,571 Kevin Silacci -- $11,065 Danielle Benakos -- $10,995 Linda Pfeiffer -- $10,965 Steve Gwozdz -- $10,685 John Luke -- $10,100 Sheri Smith -- $10,095 Aegon Transamerica Foundation -- $10,000 Anonymous (3) -- $10,000 Bike the US for MS -- $10,000 Genzyme Corporation -- $10,000
FUELING IMPACT 11
R E T E N T E N M E U G L A O V NG E
WE ARE LEADERS IN A WORLDWIDE MS MOVEMENT MOBILIZING MILLIONS OF PEOPLE TO DO SOMETHING ABOUT MS NOW. 12 2014 ANNUAL REPORT
VOLUNTEERS BY THE NUMBERS VOLUNTEERS CONTRIBUTED OVER
18,691 HOURS OF SERVICE IN 2014
=
WHICH IS THE EQUI VALENT TO
8.3 FULL-TIME EMPLOYEES
THANK YOU FOR YOUR SUPPORT
2014 HEROES OF THE MONTH
975 individuals contributed 5,850 hours across 13 Walk
The Chapter celebrated outstanding volunteerism
MS: Northern California events while connecting with
in 2014 by honoring a select group of volunteer
over 7,000 participants.
“heroes.� These individuals were recognized for donating countless hours of service to special events,
586 individuals contributed over 2,400 hours at Bike MS:
support groups, peer connections, in-office support,
Waves to Wine while connecting with 2,300 participants.
and more.
Over 167 individuals contributed more than 617
Congratulations to the 2014 Heros of the Month:
hours at other Chapter events, including MuckFest MS, DuskBuster, and more.
Linda Cotter Karen Gaetano
In addition to their hours of service, special events
Marie Hansen
volunteers raised over $17,000 to support life-changing
Bill Hertan
programs and services and groundbreaking MS research.
Cheryl Mellor Cliff Nunes
23 individuals volunteered in Northern California
Elsa Rivera
Chapter offices for 1,426 hours, equivalent to almost one
Isabel Santos
full-time employee working for one year.
Francesca Smith Alexis and T. Taylor
73 volunteers led 50 Self-Help Groups in Northern California, connecting with 750 people living with MS. 21 Government Relations Committee volunteers advocated for policy and legislation change state-wide. 8 peer counselors provided emotional support to people living with MS.
FUELING IMPACT 13
20 FIN 14 AN CIA LS
FINANCIAL STEWARDSHIP Every gift received by the Chapter is used to its fullest potential. Through strong fiscal leadership, the Chapter spent only .11 cents to raise a dollar, versus the industry standard of .20 cents per dollar, allowing more funds to be directed to programs and research. The Chapter seized opportunities to leverage funds to drive greater impact by seeking monetary and in-kind gifts from businesses and grants to augment services. At “do it yourself� fundraising events, community members also leveraged gifts, expanding awareness and our universe of supporters.
HOW FUNDS ARE USED
Our Chapter supports over 84,000 people affected by MS in Northern California by raising funds
for cutting-edge research, arising change through advocacy, facilitating professional education, and providing programs and services that empower people with MS and their families. 14 2014 ANNUAL REPORT
20 BO 14 TR A US RD TE OF ES
BOARD MEMBERS Will Bryant Nancy N. Byl, PT, Ph.D. Jonah R. Chan, Ph.D.
BOARD CHAIR Angie Lai
BOARD OFFICERS Natalie L. Brisbin, Secretary Katherine Bock, Treasurer Thomas M. Galizia, Governance Chair Jay Thayer, Chair Elect
C. Budd Colby, Ph.D. Elizabeth Crabtree-Hartman, MD Michelle Dennedy Heather Fargo Matt Frinzi Douglas S. Goodin, MD David R. Hultman Warren Kist H. Penny Knuff David Larson
STAFF LEADERSHIP Janelle Del Carlo Chapter President Stewart Ferry Statewide Director of Public Policy Robert Pinnix Director of Special Events Jaclyn Smozcynski Vice President of Programs & Client Services
Doug Richardson Chuck Robbins John A. Schafer, MD Dan Stokes
EMERITUS BOARD MEMBERS Gary Ryness Fillmore Marks
FUELING IMPACT 15
E
GO CIR LD CL EN
2014 HONOREES
GOLDEN CIRCLE Thanks to the generosity of the following donors, more than $1,370,000 was contributed to Golden Circle during the 2014 campaign.
CIRCLE OF DISTINCTION ($1 million+) Annonymous Estate of Ina Virginia Waddell ANGEL ($500,000-$999,999) Estate of Mathilda Swall PATRON ($50,000-$249,999) Estate of Rochelle Bain Estate of Diane Garrett Estate of Marcella Lehto Estate of Elizabeth Malfetone Estate of Dianne Wallin-Armour SPONSOR ($10,000-$49,999) Change A Life Foundation The Bruce J. Granicher Fund Margaret E. Haas Family Fund Estate of Frieda Parry The Pay It Forward Foundation Peters Family Trust The Stare Fund FRIEND ($5,000-$9,999) Margaret Ayotte & John Hauserman Biogen Idec Michele Blomberg Bruce Dunlevie
16 2014 ANNUAL REPORT
Estate of Barbara June Erickson Frances & Ted Gaballe Corinne Hedrick Elizabeth Jameson & David Berry Jane & David Larson Piedmont Grocery Cynthia Schwabacher-Jamplis LEADER ($2,500-$4,999) Betty Baldi Nancy Barrett Charitable Gift Fund Danford Foundation Lynn & Philip DiStanislao John Dwyer The Heck Foundation J.B. Hobday Barbara & Carl Jacobson Susan & William Kenney Martin Krovetz Carmen & Dean Lauerman Rachel Leiterman & Noam Shendar Bonnie & Dr. Kenneth MacKay Abigail Pike Lois Rosano Estate of Curtis Schuppe Tides Foundation Marjorie & Larry Yohner MEMBER ($1,000-$2,499) Elizabeth & Jose Abad
Judy & Scott Alberts Todd & Pamela Bakar Barnston-Koutsaftis Family Foundation Michael Becker Dawn & David Bennett Marian Berg Carole & John Bettencourt Janet Birenbaum Karlene & Kenneth Bley Stephen Butler Jay Capela Kim Cherise Cohan-Jacobs Family Fund Brett Coon Jim Crowley David Davick Glee Ann & Dwight Davis Cindy & Paul Desmet Judy & Albert Dolata Marga Dusedau & David Sklar Sharon & Sidney Dwelle Sally & John Endriz Marcia & Dr. David Farrar Robert Ferguson Alison Geballe John and Marcia Goldman Foundation Subha Gollakota Patricia Greeley Mel & Bill Hambleton Kathryn Henkens Cedric Huesler Estate of Gwyneth Jones Steven Kevin Knights of Columbus Council No. 4060 Ivan Koon Glen Kramer Jeffery Lagges Angela Lai and Matt Wherrett Pat and Ken Larson Charitable Gift Fund The Leland Foundation Mary Lernihan Jill & Ian Leverton Saundra & Michael MacGregor Joan & Tag Mansour
David Mauldin Neil and Amelia McDaniel Charitable Trust Dale Melin Sandy & Howard Miller Morgan Family Foundation The Phillips Family Ponderosa Homes II, Inc. Brett Roberts Ann & Mark Ryan John Ryan Cynthia & Rodney Silveira Kathleen & Gary Ryness V’Anne Singleton & Dr. Robert Elfont Estate of Lynn Helm Smith John & Marjorie Sproul Kristy Stromberg Teco Pneumatic Inc. Stephen Tollafield Antoanela & Scott Vaccaro Frank van Veenendaal The Villalba Family Jillian & Richard Wald Langston Walker Janet & Daniel Wall Sandra & Robert Wallace Western Digital Corporation Susan & Monte Whitefield
We also gratefully acknowledge all of the donors who contributed more than $40,000 to the 2014 Golden Circle campaign with gifts up to $999.
FUELING IMPACT 17
WHAT IS MULTIPLE SCLEROSIS? Multiple Sclerosis (MS) is a disease that affects the central nervous system by disrupting the flow of information from the body to the brain. It is an elusive disease with no known cause and no known cure. Symptoms vary from person to person depending on where the central nervous system is affected.
MS FACTS •
More than 2.3 million people are living with MS worldwide
•
12,500 people are living with MS in Northern California
•
Most people are diagnosed with MS between the ages of 20 and 50
•
At least two to three times more women than men are diagnosed with MS
•
MS is the most common neurological disease leading to disability in young adults
OFFICE LOCATIONS SAN FRANCISCO
SACRAMENTO
1700 Owens Street, Suite 190
4221 Northgate Blvd., Suite 4
San Francisco, CA 94158
Sacramento, CA 95834
tel + 1 415 230 6678
tel + 1 916 927 9113
fax +1 415 230 6652
fax +1 916 927 9190
SILICON VALLEY
CENTRAL VALLEY
2589 Scott Blvd.
422 McHenry
Santa Clara, CA 95050
Modesto, CA 95354
tel +1 408 988 7587
tel +1 209 214 6022
fax +1 408 988 1816
fax +1 209 523 4568
NATIONALMSSOCIETY.ORG/CAN 1-800-FIGHT MS (344-4867)