2010 Annual Report
About Spina Bifida Spina Bifida is the most commonly occurring, permanently disabling birth defect in the United States. It affects over 166,000 men, women, adolescents, and children across the nation. Spina Bifida occurs when the spine of a baby fails to close properly in the first month of pregnancy resulting in an opening in the spinal column. Those who are born with Spina Bifida live with the challenges of conditions like hydrocephalus (fluid on the brain), full or partial paralysis, bladder and bowel complications, learning disabilities, depression, deadly latex allergy, and social issues. There are 65 million women of childbearing age in this country, and all are at risk of a Spina Bifida pregnancy. It is imperative that all of them know that by taking 400 micrograms of folic acid every day, before they become pregnant, they can reduce the risk of having a baby with Spina Bifida by up to 70%.
SBA’s Mission Statement To promote the prevention of Spina Bifida and to enhance the lives of all affected.
About the Spina Bifida Association® (SBA) Since 1973, SBA has been the only national voluntary health agency dedicated to preventing Spina Bifida in future generations and improving the lives of those affected through education, advocacy, research, and service. SBA has a presence in more than 125 communities nationwide and touches thousands of people each year. Lives are changed by the programs SBA creates, the services the organization provides, and the gains achieved through its advocacy and its research.
Core Values Core values comprise the most central and fundamental aspects of an organization. They define our organization from its simplest levels to its highest aspirations; they aim to shape our goals, define our practices, and give purpose to our work. The SBA has always prided itself on being the voice for the over 166,000 Americans who live each day with the challenges of this complex, and at times devastating, birth defect. The development of our organizational core values has strengthened and unified that voice, allowing us to truly seek to achieve what we hope will be a bright and healthy future for our community.
SBA Core Values Visionary Leadership • Integrity • Commitment to Excellence • Collaboration Effective Voice • Inclusiveness
2 | Spina Bifida Association Annual Report
Visionary Leadership We lead with hope and serve with passion toward our vision for the future. SBA’s vision statement outlines our hope for a future where those living with Spina Bifida thrive in a barrier-free world that offers ready access to an array of effective treatment options and uniformly excellent care. Because we believe that medical research and breakthroughs are instrumental to achieving this vision, SBA has set out to serve as a leader in convening health care professionals, researchers, and scientists who share our goals. SBA’s Professional Advisory Council (PAC) is comprised of leading health care providers from across the country and who represent the many disciplines that treat Spina Bifida. Together, these brilliant minds work with SBA to ensure that we examine and interpret current research being conducted in Spina Bifida and evaluate these outcomes, while encouraging and directing future research efforts. In 2010, SBA engaged in such an effort related to our First World Congress on Spina Bifida Research and Care. This inaugural meeting of international health care providers, researchers, and scientists set the groundwork for current work being done as it relates to Spina Bifida and helped to establish the basis for future efforts. SBA’s creation and dissemination of summary proceedings from this event, as well as the development of a Web site for health care providers working with Spina Bifida, has positioned SBA and our PAC as leading authorities on research and treatment options related to this complex birth defect. To help ensure that future research and treatment efforts will continue to improve the quality of life for those living with Spina Bifida, SBA also increased its financial commitment to this work in 2010. Thanks to a generous gift from the Ashley Rose Foundation and its founders Raymond and Linda Pitek, SBA added a new $50,000 award to our Young Investigators Program. Now in its seventh year, the program represents our investment in the future through the support of researchers early in their careers. The new Ashley Rose award will be dedicated to a promising young scientist each year for the next five years to investigate the causes and treatment of Spina Bifida.
Spina Bifida Association Annual Report | 3
Integrity We pursue our mission with honor, fairness, and respect for all individuals while we act as good stewards of our mission and the public’s trust. SBA serves as a voice for our community—individuals and their families, friends, and caregivers who are all affected by this complex birth defect. While we often tell the collective story of our community, that story is built upon the stories of thousands and thousands of people who come to SBA for guidance and support during their most vulnerable and challenging moments. It is our duty to represent and communicate the interests of these individuals with the highest level of integrity and with great passion. Over the last several years, SBA has conducted an internal reorganization to ensure that the work we are doing is of the highest standard and touches the lives of as many people as possible. While this effort has not been easy, the organization’s forward-thinking planning and transparency has been commended by our constituents. In 2010, SBA was once again the recipient of a four-star rating from Charity Navigator, an independent charity evaluator. The four-star rating, the highest achievable, indicates that SBA excels with regard to financial health, organizational efficiency, and organizational capacity. We are honored to have achieved this perfect rating for the past four years. SBA was also proud to be nominated, as part of a collaborative working group, for a 2010 Centers for Disease Control and Prevention (CDC) Honor Award. These awards celebrate groups and individuals for their service and dedication to public health initiatives. Specifically, SBA was nominated for its work towards folic acid fortification of corn masa, an initiative that we believe will help to lower future incidence of Spina Bifida in the Hispanic community, a group that currently has the highest incidence of neural tube defects. This work is only part of our efforts to ensure a happier and healthier tomorrow for our entire community. SBA, in partnership with the Centers for Disease Control and Prevention and Spina Bifida clinics across the country, has been actively developing an electronic medical record and National Spina Bifida Patient Registry. We believe that the outcomes of these projects will aid in the development and advancement of treatment and care options.
4 | Spina Bifida Association Annual Report
Spina Bifida Association Annual Report | 5
6 | Spina Bifida Association Annual Report
Commitment to Excellence We aspire to hold ourselves to the highest standards and serve as champions of our cause, striving to be the best in all that we do. The notion that knowledge is power is a long-held belief of the Spina Bifida Association particularly as it relates to our role as the single most important source of unbiased information on Spina Bifida. By providing the most up-to-date and current information about Spina Bifida, we work to increase the prospect for better health and success in life for all members of our community through a thorough understanding of treatment, care, and support options. Whether it is through our national magazine, our various electronic newsletters, our annual Conference, or our award-winning Web site, SBA has shown a commitment to excellence by gathering, reviewing, and disseminating information on all aspects of Spina Bifida. Often, our Professional Advisory Council is called upon to develop and review new information and provide additional insight and perspective on Spina Bifida. SBA’s National Resource Center and thriving Chapter network continue to be a crucial lifeline for individuals and families struggling with the challenges of Spina Bifida. Whether we are serving as the reassuring voice on the other end of the phone line or the sympathetic face holding a hand in need, in 2010, SBA provided vital resources to over 14,000 people across the country. Through our awareness campaigns in 2010, SBA strived to surpass our previous levels of outreach to raise awareness about this devastating birth defect. Using unique alternative media forms such as electronic billboards in New York’s Times Square, Internet blog and multimedia Web sites as well as more traditional methods such as radio and television public service announcements, SBA reached over 220,000,000 people. SBA continues to honor excellence and education in our community. Recognizing that the need for financial aid for post-secondary education is greater than ever due to our nation’s economic challenges, SBA invested over $17,000 in its scholarship program to help our youth achieve their dreams.
Spina Bifida Association Annual Report | 7
Collaboration We value mutual respect and honesty as the cornerstones of all our relationships. We employ teamwork and transparency to guide our efforts. It is our belief that we can reach even greater achievements for our community through careful and dedicated collaboration. One of the strongest and most important collaborative efforts SBA has embarked upon is with the Centers for Disease Control and Prevention (CDC) and its National Spina Bifida Program (NSBP). The NSBP was created by Congress in 2003. Housed at the National Center for Birth Defects and Developmental Disabilities at CDC, it has maintained a two-fold mission to: (1) prevent and reduce the incidence of births affected by Spina Bifida and (2) improve the health, well-being, and overall quality of life for the individuals and families affected by Spina Bifida. In 2010, two of the NSBP projects that SBA and the CDC collaborated on provided analysis of the current landscape of Spina Bifida and gave insights into future initiatives that could translate into positive change for our community. The findings of these projects were released during the SBA’s 2010 National Conference. The first of these was a project focused on the concept of transition. The project’s aim was to examine the differences among three Spina Bifida Clinics with different approaches to transition interventions and services. Issues that were addressed included necessary resources and cost, effectiveness, and barriers to and facilitators of effective individual transition. The information garnered from the transition project was instrumental in the development of SBA’s new programs on the subject. The second project was carried out to collect information about care coordination and identify procedures being used in Spina Bifida clinics. The intent was to share the study’s findings with the broader medical community serving our population. Based on the findings, a series of recommendations for care coordination that could improve future health care for those living with Spina Bifida was generated.
8 | Spina Bifida Association Annual Report
Spina Bifida Association Annual Report | 9
10 | Spina Bifida Association Annual Report
Effective Voice We work together to affect change and encourage knowledgeable advocacy on a personal, community, and global level. Grassroots advocacy is at the heart of SBA’s advocacy efforts. Through grassroots efforts, our community is empowered to take action that can make a real and tangible difference for everyone who lives with the challenges of Spina Bifida. In an increasingly complex and changing economic environment, it is imperative that members of our community understand their ability to serve not only as their own advocates but as part of a larger, stronger voice for all. With this thought in mind, in 2010, SBA created our exciting advocacy program, SPEAK for Spina Bifida. SPEAK stands for Spina Bifida Policy, Education, Advocacy, and Knowledge. The program helps to empower our community to bring attention to issues that affect our cause as well as to offer tangible evidence of the significant benefits of the National Spina Bifida Program (NSBP) to key decision makers in our government. Throughout the year, SBA worked with our champions in the Congressional Spina Bifida Caucus to develop legislation addressing the many barriers that exist for individuals with disabilities in accessing quality primary—and preventative—health care. Those extraordinary efforts resulted in legislation introduced in Congress. The Debbie Blanchard Access to Health Care for Individuals with Disabilities Act of 2010 seeks to help facilitate access to health care by identifying providers whose offices and examination rooms are accessible for individuals with disabilities. Named for a member of our community who lost her life to cervical cancer that may well have been prevented simply through access to medical care for women with mobility impairments, the bill also helps to increase awareness among health professionals of the need to provide an accessible environment. SBA supported other legislation that impacts our community such as the Birth Defects Prevention, Risk Reduction, and Awareness Act of 2010. This bill sought to authorize new funding for pregnancy risk information services across the country and provides support for a national education effort about healthy pregnancy.
Spina Bifida Association Annual Report | 11
Inclusiveness We represent varied cultures, ethnicities, and backgrounds, embracing diversity of thought, innovation, and creativity. We celebrate that approximately 80% of children in
track their child or patient’s progress through the key
the United States affected by Spina Bifida will now live
developmental milestones of childhood and identify
to adulthood. Some young adults with the birth defect
potential difficulties early on. The site then offers road
are living independently, working in meaningful jobs,
tested solutions, serving as an invaluable resource for
managing their own health care, and enjoying adult
families and health care practitioners.
relationships. However, there are still too many young people with Spina Bifida who have not achieved these important milestones.
Users may also be directed to SB University ® (www. sbuniversity.org), our online educational portal also launched in 2010. With medical and psycho-social
Breaking down barriers is something that SBA has
sessions available online 24 hours a day, 7 days a week on
always strived to do. From seeking inclusion in schools
a variety of topics related to Spina Bifida, SB University
to support of the Americans with Disabilities Act, we
provides our community with the tools they need.
have always sought to ensure that programs and services are available to all members of our community and that impediments that prevent them from living happy and successful lives can be overcome.
Our Board of Directors has a long-held belief that the National Conference and its many educational opportunities should be offered to all members of our community. SB University truly enables anyone to access
In 2010, SBA looked inward and set about modifying
life-saving information through its sessions on a range
and creating programs and services that would touch
of topics. The overwhelming initial response to this
and positively impact more members of our community
program is evidence that it is opening doors and offering
than ever. Through the development of new Web based
a new perspective to its thousands of users.
programs designed to identify potential challenges early in life to developing greater awareness about Spina Bifida through events and public service announcements, SBA truly soared toward the highest vision of all—greater happiness for our community.
Throughout 2010, our cause also received greater visibility through SBA-sponsored events like our Walk-N-Roll® for Spina Bifida, 100 Nights of Parties, and 4b4the4th. These fun-filled events are being held around the country and encourage inclusiveness,
The Preparations Web site (www.sbpreparations.org),
awareness, and celebration of our cause. They touch the
developed by SBA in collaboration with leading health
lives of thousands of Americans—those with Spina Bifida
care providers across the country and the CDC, seeks
and those who love and care for them—and unite them all
to ease the transition from childhood to adulthood for
in the hope for a better, healthier, and happier tomorrow.
those living with Spina Bifida. Users can interactively
12 | Spina Bifida Association Annual Report
Financial Statements
Spina Bifida Association of America For the Year Ended December 31, 2010
SBA Chapters and Support Groups
Note: Each SBA Chapter is separately incorporated, but is required to sign an affiliation agreement with the National Office annually. The preparation of financial statements in conformity with generally accepted accounting principles requires management to make estimates and assumptions that affect the reported amounts of revenues and expenses during the reporting period. Actual results could differ from these estimates. Chapters with an * are included in the charts provided along with the National Office. Chapters with a ** are incorporated entities of the National organization.
Alabama
Illinois
Ohio
SBA of Alabama* Birmingham, AL
SBA of Illinois* Chicago, IL
SBA of Cincinnati* Cincinnati, OH
Arizona
Indiana
SBA of Arizona* Phoenix, AZ
SBA of Indiana* Indianapolis, IN
SBA of Northwest Ohio* Maumee, OH
California
Iowa
SBA of Greater San Diego Support Group San Diego, CA
SBA of Iowa* Des Moines, IA
SBA of Oregon Support Group Salem, OR
Pennsylvania
SBA of the Greater Bay Area Support Group Tracey, CA
Kentucky SBA of Kentucky* Louisville, KY
SBA of Delaware Valley* Worcester, PA
Massachusetts
Tennessee
Colorado SBA of Colorado Denver, CO
*
Connecticut SBA of Connecticut Hartford, CT
*
District of Columbia SBA of the Mid-Atlantic Region* * Washington, DC
Florida SBA of Central Florida* Maitland, FL SBA of Tampa Bay Support Group Tampa, FL
Georgia SBA of Georgia* Buford, GA
Oregon
SBA of Massachusetts* Milford, MA
SBA of Tennessee Nashville, TN
Michigan
Texas
SBA of West Michigan Grand Rapids, MI
SBA of Houston Gulf Coast* Houston, TX
Minnesota
SBA of North Texas* Garland, TX
SBA of Minnesota* Brooklyn Center, MN
Montana SBA of Montana Support Group Helena, MT
New York SBA of Northeastern New York* Scotia, NY Formerly the SBA of the Albany/Capital District
Washington SBA of Washington State* Spokane, WA
Wisconsin SBA of Wisconsin* Wauwatosa, WI
Statement of Financial Position
EXHIBIT A
SPINA BIFIDA ASSOCIATION OF AMERICA STATEMENT OF FINANCIAL POSITION AS OF DECEMBER 31, 2010 ASSETS ASSETS Cash and cash equivalents Grants and contributions receivable Due from related party Investments Prepaid expenses Inventory Property and equipment, net Total assets
$
62,284 396,955 159,621 1,063,747 79,330 21,867 17,674 $ 1,801,478
LIABILITIES AND NET ASSETS LIABILITIES Accounts payable Accrued expenses Due to related party Deferred revenue Deferred rent Total liabilities NET ASSETS Unrestricted Temporarily restricted Permanently restricted Total net assets TOTAL LIABILITIES AND NET ASSETS
$
$ $
122,909 66,280 11,938 6,544 207,671
1,290,840 203,181 99,786 1,593,807 $ 1,801,478
Statement of Activities and Change in Net Assets
EXHIBIT B
SPINA BIFIDA ASSOCIATION OF AMERICA STATEMENT OF ACTIVITIES AND CHANGE IN NET ASSETS FOR THE YEAR ENDED DECEMBER 31, 2010
REVENUE Direct public support: Grants Contributions Donated services Special events Indirect public support: Federated fundraising organizations Total public support: Other revenue: Conferences and meetings Sales of materials and services Investment income Membership dues Other Total other revenue Net assets released from restrictions Total revenue EXPENSES Program services: Education Member services/ chapter development Information and referral Research Government relations Total program services Supporting services: Fundraising Management and general Total operating expenses Change in net assets Net assets at beginning of year, as previously reported Prior period adjustment Net Assets, Beginning of Year, as Restated NET ASSETS AT END OF YEAR
Unrestricted
Temporarily Restricted
Permanently Restricted
Total
$ 1,773,864 513,842 319,215 99,016
$ -
$ 5,000 -
$1,773,864 518,842 319,215 99,016
89,550
-
-
89,550
$2,795,487
-
5,000
2,800,487
398,921 62,409 14,048 1,442
4,124 -
-
398,921 62,409 18,172 1,442
476,820
4,124
-
480,944
2,374
(2,374)
-
-
3,274,681
1,750
5,000
3,281,431
1,700,633
-
1,700,633
531,052 283,765 157,419 131,713
-
-
531,052 283,765 157,419 131,713
2,804,582
-
-
2,804,582
243,263 71,355
-
-
243,263 71,355
3,119,200 155,481
1,750
5,000
3,119,200 162,231
1,135,359 1,135,359
236,217 (34,786) 201,431
60,000 34,786 94,786
1,431,576 1,431,576
$ 1,290,840
$203,181
$99,786
$1,593,807
Statement of Activities
National Spina Bifida Association For the period ending December 31, 2010 Revenues
Expenses 89% Program Services $2,494,504
2% Administration $68,396
28% Public Support $825,506
9% Fundraising 239,082 14% Conference $398,921
55% Federal Grants $1,640,234
3% Other $96,240 Total Revenues: $2,960,901
Total Expenses: $2,801,982
National and Chapters For the period ending December 31, 2009 Revenues 1% Other $26,766
0.5% Membership $14,109
10.5% Special Events $558,503
Expenses 10% Administration $494,077 11% Fundraising $535,130
16% Conferences $785,580 79% Program Services $3,875,118
72% Contributions $3,523,425
Total Revenues: $4,908,383
Total Expenses: $4,904,325
4590 MacArthur Boulevard, NW Suite 250 • Washington , DC 20007 Phone 202.944.3285 • Toll Free 800.621.3141 • Fax 202.944.3295 www.spinabifidaassociation.org
