SBA AND THE COMMUNITY:
PARTNERS FOR A FUTURE
About Spina Bifida
pina 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. 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 efforts.
“ Mere words cannot express what SBA has done for me. It not only helps provide advocacy, education, scholarships, and other programs related to my condition; but it provides a feeling of empowerment and kinship between all of the 166,000 in the U.S. that are affected by this birth defect. I say this because I have had the opportunity…to make friendships that will last a lifetime. That is something you cannot put a value to.” Will Dickey
Letter from Our Chair
t’s no secret that Americans today are facing some of our most challenging times. Our economy is still struggling with a historic global economic downturn, many of our friends and neighbors are experiencing employment challenges, and our health care expenses are at an all-time high. Goals that seemed within our grasp just a few years ago now feel out of reach. And at times it feels like we need to postpone our dreams. It is for these reasons, and many others, I am so struck by the accomplishments of the Spina Bifida Association (SBA) during these challenging times. By relying on our greatest asset, our incredibly strong community, we have been able to leverage our limited resources to continue to achieve and build on the dreams we all share for a bright future. Every day I am awed by the stories I hear from those we serve about the challenges they face and the inspiring ways in which they face them head on and overcome them. And I am beyond proud of our collective strength when they share with me how the work that SBA is doing has helped them. Thirty-nine years ago, SBA was founded by a group of parents who believed in the rights of their children. They believed that Spina Bifida was a condition that deserved recognition and attention by our country’s legislators, health care providers and researchers, and the public-at-large. They provided the basis for an incredibly strong movement that has been buoyed by the unshakable belief that this dream will be achieved; that together we will see a day when individual life choices are not impeded by Spina Bifida and all in our community experience rich and personally fulfilling lives.* Thank you for the opportunity to be a part of such an amazing and inspiring cause. From our corporate partners to each and every one of the families, individuals with Spina Bifida, and the caring community around them, I am humbled by your dedication and commitment. I know that together, we can weather the challenges of our environment and build on the dream we all share for a healthier, happier tomorrow.
George Sturm Chair, SBA Board of Directors *A quote from SBA’s vision statement
Education that changes lives…
“ Educational resources, conferences, and wonderful Chapters that have assisted my family through nineteen years of adventure with Spina Bifida have been invaluable to us. We cannot thank SBA enough.” Michell Haase
he challenges that arise from Spina Bifida can seem overwhelming at times and occur without notice. They can leave folks scrambling for information on how to help themselves or their loved one. The Spina Bifida Association (SBA) strives to provide answers for these individuals and families at any time, anywhere.
SBA Web site pages viewed in 2011
Transition Programs Tackle Challenging Problems Living an independent and happy adulthood has often been cited by the members of our community as the number one dream they have for themselves as adults with Spina Bifida or, as parents, for their children. To help ensure this is a possibility for all, SBA worked with partners such as the Centers for Disease Control and Prevention and our many corporate supporters to develop and strengthen our transition programs. Focused on building the independent living skills necessary for adulthood and overcoming developmental and health barriers, SBA’s transition programs are based upon the latest interventions suggested by health care providers across the country. Vital input and perspectives from adults with Spina Bifida, as well as parents, have enriched these programs with first-hand knowledge and experience. And because this information is available online and at no cost, last year nearly 3,500 members of our community were able to access it as soon as their need arose. SBA transition programs have been developed to allow participants to learn from more than one medium and move along a participatory continuum from selfdirected to group learning experiences.
Estimated reach of SBA public awareness and education efforts in 2011
SBA Focuses on Adult Health Care Needs Through the development of shunt technology and other medical advances, more people with Spina Bifida are now living into adulthood than ever. While the aging process on the human body has long been studied, the effect of this process on those living with Spina Bifida is only now being realized. In 2011, to address this growing need in our adult population, SBA focused our attention in this area. Through work with the clinicians on our Professional Advisory Council, SBA developed a new health information sheet series focusing on adult health care. These sheets, available on the SBA Web site, expound on topics such as osteoporosis, type 2 diabetes, and men’s and women’s sexuality with a particular focus on the impact of Spina Bifida on these issues. This year, SBA also worked with medical professionals to develop in-depth sessions held during our 38th National Conference in Anaheim, California which further investigated issues related to adult health and aging. These sessions were recorded for distribution through our online educational platform, SB University®, making them available to anyone in our community for free, 24 hours a day, 7 days a week.
“ We began participating in an SBA support group… while I was still pregnant. The other members helped us tremendously. We no longer live there but still participate in discussions with the other members and consider them life-long friends.” Kari Jilka Bacon
Raising the Level of Public Education and Awareness Increasing the public’s awareness and understanding of this complex condition has long been a focus of SBA. This year, through efforts across a myriad of media including television, radio, and the internet, SBA delivered important messages about Spina Bifida, its related conditions, the work of our community, and the life-saving effects of folic acid to over 23 million Americans. Spina Bifida continues to occur at a much greater rate in the Hispanic population in this country. To help build awareness, in early 2011, SBA executed a Spanish-language public service campaign designed to deliver an important message: Research shows that a daily dose of 400 mcg folic acid can reduce birth defects like Spina Bifida by up to 70%. Calls and emails to our dedicated Spanish-language 800-number increased immediately and SBA was uniquely positioned to expertly answer questions and provide further resources as a result. Throughout the year, SBA also focused on strengthening the impact of our existing awareness programs such as 100 Nights of Parties, our house party program where supporters host events to spread awareness about Spina Bifida and raise funds to support the cause. This program saw record participation and raised almost $144,000 to improve the quality of life for those living with Spina Bifida—a true testament to the commitment of our constituents to this cause. And most importantly, participants helped to change the lives of thousands across the country as they shared messages to raise Spina Bifida awareness.
441,175 Visitors to SBA Web sites in 2011
Support that touches lives…
hile the knowledge and awareness about Spina Bifida continues to increase, much is still not understood about this complex condition. Its challenges can often feel isolating and overwhelming. The Spina Bifida Association (SBA) seeks to overcome these feelings for individuals by creating a community of support for those in crisis and a venue to celebrate achievements through our local Chapters, our online communities, and our events around the country. Local Chapters Strengthen Programs and Events to Meet Needs Since their inception, SBA Chapters provide critical services to our constituency and family-friendly events that helped to build a sense of community. As the need for specialty programs addressing our growing adult population and alternative educational opportunities have increased, our Chapters rose admirably to the challenge. In 2011, they brought together the community in new and innovative ways using technology-based programs, such as telephone support groups and online resource centers that offer Followers of SBA social increased accessibility; created specialty educational media networks in 2011 programs for our various sub-populations; and expanded events for more state and regional coverage.
The Walk-N-Roll® for Spina Bifida is a shining example of this phenomenon. In its third year, the Walk-N-Roll program expanded to 13 events held by SBA Chapters around the country. With over 3,500 participants and 7,500 donors celebrating Spina Bifida and raising over $500,000 for programs and services to benefit people living with this condition, the WalkN-Roll truly exemplifies the can-do spirit of our community. So popular are these events that plans for 2012 promise twice this outpouring of support.
Growth in funds raised by SBA Walk-N-Roll® events in 2011 compared to 2010
“ I have participated in the SBA Walk-N-Roll for two years in a row now. I love it. It’s great to see that there are others out there being affected by Spina Bifida and that we aren’t alone. I feel honored to participate.” Veronica Tessicini Demers
Online Communities Reach Those in Need Everywhere For those who do not live in areas served by SBA Chapters, SBA has sought to develop online communities through Facebook and Twitter that bring together people living with Spina Bifida. In addition to daily posts of resources and stories of interest, SBA’s online social media allows members of the Community to interact with their peers across the country and across the world for education and support. Throughout 2011, SBA encouraged community participation on these sites with programs such as 4B4the4th, SBA’s social media awareness and fundraising drive that culminates on the 4th of July, and our Celebrate SB photo contest throughout Spina Bifida Awareness Month in October. SBA’s social media communities saw astounding growth in 2011, nearly doubling the 2010 participation. National Resource Center Evolves to Offer Support on Complex Issues While SBA strives to offer information and support to anyone who needs it at anytime, anywhere through our social media and online support groups as well as our local Chapters, the reality is that some issues are simply too complex or too unique to be supported by these environments. In order to address these more complex issues, SBA developed a new component to our National Resource Center—the Ask the Expert program. Users can submit detailed questions regarding Spina Bifida through an online form. SBA staff then work with medical professionals, therapists, and other experts to find answers. Popular questions are featured monthly and archived for others who face similar issues.
“ I found out at 16 weeks my twins both had forms of Spina Bifida. We became involved with a local SBA Chapter. It was incredible having these contacts and support from my earliest months before my girls were even born!” Susan Fantz Gibbs
Research that saves lives…
esearch remains the key to unlocking the mysteries that envelop Spina Bifida and improving the quality of care for those living with this condition. The Spina Bifida Association (SBA) remains committed to increasing the body of work on Spina Bifida being carried out and raising essential funds and offering support to continue this life-saving work. It is our belief that a better tomorrow will be a reality because of the work being done today. SBA Continues Support of Research Efforts SBA’s Young Investigator Program, now in its seventh year, continues to demonstrate the organization’s commitment to supporting research into this complex birth defect. Bolstered by funding generously donated in 2010 by the Ashley Rose Foundation, the Young Investigator Program continues to foster scientists early in their careers to bring their expertise and training to benefit our community.
New Centers Added to Groundbreaking Spina Bifida Patient Registry
During 2011, the National Spina Bifida Patient Registry, expanded to add eight new institutions as data collection centers, increasing the total to 19 participating Theresa Crytzer, DPT, ATP and Michelle Polfuss, PhD, RN, APNP-AC/PC, our 2011 institutions. The Patient Registry, awardees, are both embarking on work that factors heavily on challenges faced by part of the National Spina our community. Ms. Crytzer will examine the issue of restrictive lung disease Bifida Program, which in individuals with Spina Bifida and the resulting implications of this such as SBA advocates for in life-threatening pneumonia. Her goal is to develop a standardized approach $1.4 million Congress, was originally to physiologic measurement of respiration that will create better evaluation SBA investment in research established in 2008 tools to be used at the bedside. and clinical investigation in with the purposes the last 10 years Dr. Polfuss’ work will examine obesity in children with Spina Bifida, a of improving the care complicated problem faced not by only our community but also by the larger delivered in Spina Bifida disability community. Her study will assess accurate measurement of body clinics and developing a composition in children with Spina Bifida, a critical clinical contribution to furthering foundation for future research. the scientific basis for interventions with children and adults. The registry is a computerized reporting and database system relying on Results from First Phase of Fetal Surgery Study Released anonymous patient data used to identify current treatments related to some In the spring of 2011, results from the first phase of the Management of Myelomeningocele Study important clinical questions in Spina Bifida. (MOMS) were released to the public. This study, funded by the National Institutes of Health, was As the first effort of its kind to uniformly started in 2003 to compare prenatal surgery (surgery before birth) with postnatal surgery (surgery examine Spina Bifida care, we truly believe after birth) in children who had myelomeningocele, the most complicated form of Spina Bifida. this unique program holds the key to SBA has long supported this and other research into this complicated condition. Throughout improved care for this complex condition.
the seven years of the study, SBA has assisted in recruitment efforts and referred expectant parents to the three centers conducting the work around the country. Members of SBA’s Professional Advisory Council were among the first to review the phase one findings and to develop easy to understand analysis via SBA’s Web site. SBA was also pleased to welcome one of the key researchers on the study to deliver the keynote speech during our 38th National Conference. As work begins on phase two of this milestone investigation, we look forward to a more advanced evaluation of the implications of the phase one findings and further outcomes.
Advocacy that empowers lives…
he Spina Bifida Association (SBA)’s mission speaks to enhancing the lives of all individuals and families affected by Spina Bifida. One of the most important ways SBA works to serve the community is through our advocacy efforts in Washington, DC. Reaching out to elected officials and decision-makers is critically important to ensuring that a wide array of programs, like the National Spina Bifida Program at the Centers for Disease Control and Prevention, receive the support and funding necessary to achieve results. Community Signs up to SPEAK Out for Spina Bifida In 2011, SBA launched the SPEAK for Spina Bifida program. SPEAK stands for Spina Bifida Education, Advocacy, and Knowledge and the program is designed to make sure the Spina Bifida community’s voice is heard on Capitol Hill. While SPEAK employs many of the traditional methods of delivering our message to Capitol Hill, it also uses unique and innovative ways such as social media and town hall meetings to increase the impact of our collective voice. The participation of the community in advocacy efforts continues to be critical to the success of these initiatives—and when we speak together, as one voice, we are heard. In the fall of 2011, SPEAK achieved its first advocacy milestone with an action alert on the potential consolidation of the various individual Human Development and Disability programs at the Centers for Disease Control and Prevention. Within a week, more than 1,300 emails had been sent to Members of Congress from people in the community on this critically important topic and ultimately, these efforts were integral in defeating the measure. Partnering with Other Groups to Drive Policy Changes Throughout 2011, SBA worked with five partner groups (Gruma Corporation, March of Dimes Foundation, American Academy of Pediatrics, Royal DSM N.V., and National Council of La Raza) to investigate and ultimately lead the preparation of a citizens’ petition to the Food and Drug Administration (FDA). The petition, officially submitted in 2012, asks the FDA to consider the fortification of corn masa products with folic acid in this country, similar to what is currently done with enriched grain products in an effort to lower the incidence of birth defects like Spina Bifida in our country. While the outcome of the petition may not be known for some time, SBA will continue to look for opportunities to partner with groups on issues of importance to our community.
464 Participants in SBA’s SPEAK for Spina Bifida program in 2011
55 Visits with Members of Congress in 2011 to build awareness about Spina Bifida
“ It’s important to me that our government recognizes and supports the Spina Bifida community and I’m happy to do what I can to support that. Every time I use my computer to send a message to Congress for an SBA advocacy alert, I believe that as an individual, I CAN make a difference for our community.” Douglas Sorocco
OUR PARTNERS JANUARY 1, 2011 – DECEMBER 31, 2011
$5,000 – $9,999
$1,000 – $2,499
Norfolk Southern Foundation
ActivStyle AdvaMed ATG Rehab Drinker Biddle & Reath LLP Joe Giffels & Norman Lieberman* Insperity James E. Davis Family Charities Timothy & Mandy Roets* Patrick & Suzy Sabadie*# Sidley, Austin, Brown & Wood, LLP Thomas D. Turnbull & Darrell Smith* E. Ellis & Donna Zahra*
180 Medical A-Med Health Care Amtryke, LLC Antebellum Hospitality, Inc. Mildred S. Balmori* Bank of America Employee Giving Campaign Bard Medical Division John & Marilyn Bartlett* Todd & Jennifer Bell* John Betts# Michael & Janet Brewer* Michael S. Brown* Building Blocks Commercial LLC Byram Healthcare Centers Inc Calmoseptine, Inc. Canine Companions for Independence (California) Edward & Audra Carney* James & Noreen Casson* Chevron Humankind Employee Fund William & Janet Cohen* CoolHubcaps.com Marly Cornell & Ernie Feil* John & Mary Corriveau* Crane Fund for Widows and Children Sal D’Auria & Debbie Neft * Discovery Toys Jonathan & Michelle Dugan* Dunlap Codding, P.C. Edison International George D. Fish & Kathleen Sullivan* Frank Mobility Systems, Inc. Freedom Forum Scott & Carey Gorski* Thomas & Sherrie Green* Louis & Veronica Guarino* Wayne & Jennifer Hansen* Hamp & Nancy Holcomb*
$50,000 – $99,999 Coloplast Corp. Grain Foods Foundation Hollister Incorporated Arthur I. Joseph* Raymond & Linda Pitek/Ashley Rose Foundation*
$25,000 – $49,999 Bayer Healthcare Medtronic Neurologic Technologies
$10,000 – $24,999 Joseph & Helen Allegretti* Astra Tech, Inc. Cindy & Henry Brownstein*# CCS Medical Gary & Joyce Jones*# Donna M. Jones*# Marc Haas Foundation Rochester Medical Corporation Douglas J. & Kristen Sorocco*# Toys R Us Children’s Fund Uromed
$2,500 – $4,999 Timothy J. Brei* Colours Wheelchair Community Health Charities Ron Creamer* CTIA-The Wireless Association Cure Medical LLC John & Katie Dickey* Barbara J. Easterling* FM Global Foundation Christopher & Elizabeth Keicher* Christopher Malone* Thomas J. O’Donnell & Caroline S. Fawcett* Brian & Cara Packard* Praxair Foundation Scott T. & Ann Price*# Spina Bifida & Hydrocephalus Assoc of Middle Tennessee Ross & Joy Stoller* The Braun Corporation David & Lynne Thomas* Christopher D. Vance* Ana Ximenes & Steve Baroch* Gemma Youngerman*
OUR PARTNERS JANUARY 1, 2011 – DECEMBER 31, 2011
Patrick J. Hovey* IBM Employee Services Center J + J Artificial Limb & Brace Eugene Jacopetti, Jr.* Colin & Rosemary Jellish*# John P. Hussman Institute for Human Genomics KI Mobility LLC Shyam & Sharmila Kishan* Kiwanis Club of Alexandria, VA Jane C. MacElree* Gary Marsh*# McAlister’s Deli Daniel R. McMahon* Kerri McMains* MedicAlert Foundation Medicath, LLC Memorial Health Services Theodore W. Mikolon Jr.* William & Eileen Milligan*
Rosalia Misseri* Sarah Mueller* Deirdre O’Callaghan* Jerry & Katherine O’Flanagan* Llelanie S. Orcutt* P. Kim & Evelyn Packard* Frank & Gwen Pote* Premama Quarter Time Vending, Inc Karl & Carolyn Rathjen* Charles A. Reiher* Ride Designs Ed & Wendy Robinson* Samuel & Sharon Rosenfeld* Maureen Russert* Suzanne K. Shriver*# Carolyn Shumaker* Sophysa USA Inc Chris & Megan Sorensen* Nannette Sormani*
Springvale Fish and Game Club Lesley R. Stahl* Richard Stalcup* Starlight Children’s Foundation Jacqueline Strigl* Sara Struwe* George & Sheila Sturm* Ronald & Jennifer Talaga* Union Pacific Fund for Effective Government University of California San Francisco University of Illinois Laura Veltman* Mel & Rhonda Waidmann* William & Patricia Walker* John & Jennifer Ward* Kathleen M. Webb* Julie Yindra*# Dottie Youngerman*
*Member: Blue & Teal Society Recognizing those who donate $1,000 or more annually to SBA. #Member: Valiant Society Recognizing those who have pledged a planned gift to SBA.
STATEMENT OF FINANCIAL POSITION AS OF DECEMBER 31, 2011
ASSETS ASSETS Cash and cash equivalents
Grants and contributions receivable
Property and equipment, net
LIABILITIES AND NET ASSETS LIABILITIES Accounts payable
Deferred rent Total Liabilities
NET ASSETS Unrestricted
Total Net Assets TOTAL LIABILITIES AND NET ASSETS
STATEMENT OF ACTIVITIES FOR THE PERIOD ENDING DECEMBER 31, 2011
REVENUE Direct Public Support: Grants
Indirect Public Support: Federated fundraising organizations Total Public Support Other Revenue: Conference and meetings
Sales of materials and services
Member services/chapter development
Information and referral
Management and general
Change in Net Assets
Net Assets, Beginning of Year
Total Other Revenue Net Assets Released from Restrictions TOTAL REVENUE EXPENSES Program Services: Education
Total Program Services Supporting Services:
TOTAL OPERATING EXPENSES Change in Net Assets from Operating Activities Contributions from merger, net
NET ASSETS, END OF YEAR
REVENUE AND EXPENSES NATIONAL AND CHAPTERS
NATIONAL SPINA BIFIDA ASSOCIATION FOR THE PERIOD ENDING DECEMBER 31, 2011*
Program & Services 83% Federal Grants 39%
Public Support 51%
TOTAL REVENUE $4,121,477
TOTAL EXPENSES $3,843,783
NATIONAL SPINA BIFIDA ASSOCIATION AND CHAPTERS FOR THE PERIOD ENDING DECEMBER 31, 2010†
Program Services 81%
Conference 10% Special Events 8%
TOTAL REVENUE $5,196,528
Administration 8% Fundraising 11%
TOTAL EXPENSES $4,955,915
*Note: Revenue includes $292,090 from the SBF Merger shown as Public support. Note: Contributions (Revenue) and Program Services (Expenses) include Donated Services, valued at $319,215, which are not reported on the IRS Form 990.
SBA CHAPTER AND SUPPORT GROUPS
Alabama SBA of Alabama* Birmingham, AL
Iowa SBA of Iowa* Des Moines, IA
Pennsylvania SBA of Delaware Valley* Worcester, PA
Arizona SBA of Arizona* Phoenix, AZ
Kentucky SBA of Kentucky* Louisville, KY Lexington, KY
Texas SBA of Houston Gulf Coast* Houston, TX
California SBA of California** 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* St. Cloud, FL Georgia SBA of Georgia* Buford, GA Illinois SBA of Illinois* Chicago, IL Indiana SBA of Indiana* Indianapolis, IN
Maine SBA of Greater New England* Milford, MA Maryland SBA of the Mid-Atlantic Region** Washington, DC Massachusetts SBA of Greater New England* Milford, MA Minnesota SBA of Minnesota* Brooklyn Center, MN New Hampshire SBA of Greater New England* Milford, MA
SBA of North Texas* Garland, TX Vermont SBA of Greater New England* Milford, MA Virginia SBA of the Mid-Atlantic Region** Washington, DC Washington SBA of Washington State* Spokane, WA Wisconsin SBA of Wisconsin* Wauwatosa, WI
New York SBA of Northeastern New York* Scotia, NY Ohio SBA of Cincinnati* Cincinnati, OH SBA of Northwest Ohio* Maumee, OH
NOTE: Many SBA Chapters are separately incorporated; however each 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 report 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 Office.
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
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