Since its early days, the Spina Bifida Association has devoted itself to responding to the needs of those whose lives have been touched by Spina Bifida, the most frequently-occurring, permanently disabling birth defect that is compatible with life in the United States. SBA has done so by:
- its persistent advocacy efforts;
- in-depth research and review of current scientific and medical investigations;
- creating regular opportunities for members of the community to learn from and interact with each other;
- providing information that people with Spina Bifida and their families can use to improve their quality of life; and
- supply health care providers with best-practices that will help them care for people with Spina Bifida throughout their lives.
This timeline draws attention to milestones in the history of the Spina Bifida Association.
The New York Times Magazine article by Elaine Freernan, “The God Committee,” debates the wisdom and ethics of performing life-saving surgery to repair lesions in newborns with Spina Bifida. The article questioned the value of administering any form of life-prolonging care for people with disabilities like Spina Bifida.
November – Three pivotal days in SBA history
Thursday, November 9, National Easter Seals Convention, Chicago, Illinois
Representatives of 27 Spina Bifida groups gathered to attend a special “Myelomeningocele Day.” A dinner was planned for the following day to discuss the implications of “The God Committee” article.
Friday, November 10
At this dinner gathering of families with loved ones with Spina Bifida, a notebook was passed from one hand to another as each person wrote down their hopes and dreams for the future of those with Spina Bifida and their families.
Saturday, November 11
The concepts discussed the night before took solid form at a business meeting as the first pro tem officers volunteered to help shape and guide this fledgling group. Something extraordinary had indeed happened.
The Spina Bifida Association of America was formed in Chicago, Illinois.
The Association’s first officers were elected at SBA’s first National Conference in New York City. Feelings ran so high over some issues that delegates were called out of bed for an invigorating 12:30 am a debate. Dr. Chester A. Swinyard, sometimes referred to as the “Father of SBA,” was the force behind this remarkable series of events.
The first Professional Advisory Committee was created with Dr. Swinyard as the Chairperson.
At this point, SBAA served mostly as a source of information and referrals and offered assistance to SBA’s chapters and members. Later, the medical environment was changing, enabling children born with Spina Bifida to live longer than ever before. New treatments and diagnostic tools came along – artificial sphincter and CAT scans; clean intermittent catheterization (CIC) were endorsed by physicians, and prenatal tests such as ultrasound and magnetic resonance imaging to identify Spina Bifida were developed.
1981 – 1992
The Insights into Spina Bifida quarterly magazine is first published in 1981 and becomes the first publication to connect people from the Spina Bifida community to the Association’s activities at the national level.
SBAA realizes the need for physical proximity to the nation’s lawmakers and moves its headquarters to Rockville, Maryland in 1986.
The Americans with Disabilities Act (ADA) becomes law in 1990. The ADA codified the rights of people with disabilities to access, and disability efforts moved out of the realm of charity and into the civil rights arena.
In 1990, SBA’s Professional Advisory Council completed the first edition of the Guidelines for Spina Bifida Health Care Services Throughout the Lifespan.
SBA moved its headquarters to Washington, DC in 1992.
1995 – 1999
In response to pending legislation threatening the ADA, SBAA sponsors the “Rally on the Hill” in Washington, DC in 1995 and is joined by other disability-rights organizations and more than 1,500 protesters, demonstrating the political power of people with disabilities.
The Guidelines for Spina Bifida Health Care Services Throughout the Lifespan is revised in 1995.
President William Jefferson Clinton signs the Agent Orange Benefits Act of 1996. The Act provides lifetime health care benefits, a monthly allowance, and vocational training to children of veterans of the Vietnam and Korean Wars who were born with Spina Bifida.
Congressional appropriations language regarding Spina Bifida was initiated in 1998 with a significant focus — the need to expand the use of folic acid among all women of childbearing age.
The Spina Bifida Foundation (SBF) was formed in 1999 to enable its members to focus exclusively on long-term strategies to promote research and develop political muscles. The SBF became a force to be reckoned with in the struggle for political attention, resources, and funding, and raised Spina Bifida several notches on the nation’s legislative agenda. The Foundation was eventually dissolved, as SBA itself began to take the lead in advocacy efforts to advance matters related to Spina Bifida.
In response to a lack of research outcomes in Spina Bifida, a symposium entitled “Evidence-Based Practice in Spina Bifida: Developing a Research Agenda” was convened in 2003 in Washington, DC. The meeting was held to identify current evidence related to Spina Bifida, research gaps and priorities, and to foster new directions and funding for research. Sponsors included the Centers for Disease Control and Prevention, Agency for Healthcare Research and Quality, the National Institutes of Health (Office of Rare Diseases), and the U. S. Department of Education. Additional supporting agencies included the National Institute of Child Health and Human Development, the Interagency Committee on Disability Research, and the Spina Bifida Association.
The Management of Myelomeningocele (MOMS) Study kicked off in 2003. This groundbreaking study followed 183 participants whose fetuses were diagnosed with Spina Bifida. The goal of the study was to determine if intrauterine repair of fetal myelomeningocele at 19 to 25 weeks of gestation improves outcomes as compared to standard postnatal repair.
The National Spina Bifida Program (NSBP) at the Centers for Disease Control and Prevention has created thanks to grassroots advocacy and hard work by leaders in Congress. The mission of the NSBP is to prevent and reduce the incidence of births affected by Spina Bifida and improve the health, well-being, and overall quality of life for the individuals and families affected by Spina Bifida.
The Spina Bifida National Resource Center (NRC) is launched. The NRC connects people with Spina Bifida, parents and loved ones, school staff, health care providers and administrators and others to high quality, confidential information and referral services. The NRC is the only information clearinghouse in the United States exclusively dedicated to topics related to living with Spina Bifida. The NRC responds to questions and concerns in English and Spanish about health care, education, employment, volunteering opportunities and activities, local chapters and support groups, the latest research, and more.
A Congressional Committee recognizes that Spina Bifida is the leading permanently disabling birth defect in the United States and requests the expansion of the National Spina Bifida Program.
SBA publishes the third edition of the Guidelines for Spina Bifida Health Care Services Throughout the Lifespan.
The National Spina Bifida Patient Registry (NSBPR) is implemented in 2008 to improve the quality of care for people with Spina Bifida nationwide. The NSBPR is established in response to a 2006 SBA survey conducted to identify gaps in staffing, services, and patient care at Spina Bifida clinics across the U.S.
The First World Congress on Spina Bifida Research and Care, “The Future is Now,” is held in 2009 in Orlando, Florida. It brings together 350 clinicians, medical professionals, and researchers to discuss the future of Spina Bifida research, treatment, and care.
The Congressional Spina Bifida Caucus is established in at “The Future is Now” research meeting by Congressman Chris Smith (R-NJ) and former Congressman Bart Stupak (D-MI). An important consensus document was prepared, “Evidence-Based Practice in Spina Bifida: Developing a Research Agenda.” The Caucus is to serve as “permanent engine that will help us continue to advance initiatives dedicated to helping individuals, families, caregivers and the medical community.” Judy Woodruff, mother of an adult son with Spina Bifida and hydrocephalus, and anchor and managing editor of PBS NewsHour, presets the keynote address.
The first Walk-N-Roll for Spina Bifida takes place in Washington, DC in 2009, and becomes SBA’s signature fundraising and community-building event. Walk-N-Roll for Spina Bifida is a family-friendly, non-competitive walk/roll and educational resource fair that raises awareness of Spina Bifida and celebrates the accomplishments of over 166,000 people in the United States who live with the challenges it brings. Since that first Walk-N-Roll, the event has expanded to about 12 annual events supported by Association staff, and local volunteer committees and an additional 15 events run solely by Affiliated Chapters of the SBA. In 2018, Walk-N-Roll events nationwide hosted over 5,000 attendees who together raised more than $535,000. A portion of Walk-N-Roll proceeds is allocated for use by local Chapter activities and programs, with the remainder supporting national initiatives, including support for SBA’s National Resource Center, Awareness Month Campaign, and advocacy efforts throughout the year.
2010 – 2014
Preparations were developed in 2010 as a transition module and website that featured developmental milestones of people with Spina Bifida from birth to young adulthood and measured their progress.
Spina Bifida University, a 24/7 online education portal, was established in 2010. The entrance features informative presentations by medical specialists in Spina Bifida care.
SBA enters the social media age and creates its first Facebook page in 2011. This opens an instant channel of communication between the Association and members of the Spina Bifida community across the country.
The Second World Congress on Spina Bifida Research and Care, “The Future is Now,” takes place in Las Vegas, Nevada in 2012.
To address higher rates of Spina Bifida in the Hispanic community, SBA works with partner groups to develop a citizen’s petition to the Food and Drug
Administration in 2012. The petition seeks a review of fortification of corn masa with folic acid – a staple of many segments of the Hispanic population.
In celebration of its 40th Anniversary, SBA debuted its Spina Bifida Education Days series in 2013. The series is an affordable alternative to the National Conference, making education and support more accessible to Americans living with Spina Bifida. Education Days are day-long educational events held in various cities across the country. Because they are a shorter length and usually require one overnight stay at most, they are financially more accessible than the cost to register for a National Conference.
The Spina Bifida Clinical Care Network (SBCCN) is established in 2014 to identify and facilitate the provision of expert clinical care and educational resources for people living with Spina Bifida while considering resources utilized and outcomes realized, and health and life participation. The SBCCN monitors, tracks and evaluates the care provided in Spina Bifida clinics, provides input into research priorities for the NSBPR, and advocates for the adoption of best practices as they are identified.
2015 – 2016
The Adult Advisory Council is formed in response to the need to address the concerns of the growing number of adults who live with Spina Bifida.
As a result of feedback from Adult Advisory Council members, SBA distributes a Survey for Adults with Spina Bifida in 2016 to better understand the issues that most concern them. The insight gathered from this survey guides the development of future programs for adults, such as SB-YOU.
Since 2016, SBA has registered over 100,000 social media engagements.
The Third World Congress on Spina Bifida Research and Care is held in San Diego, CA.
Insights into Spina Bifida transitions from a print publication to the SB Insights blog, allowing thousands of more subscribers to stay informed about SBA’s activities and news that matters to people with Spina Bifida and those they love. Additionally, the blog platform allows more members of the community to share their voices and experiences as guest bloggers.
SBA holds its first advocacy day in Washington, DC, Teal on the Hill—100 people from 29 states had 77 meetings with Members of Congress. The thrust of the advocacy efforts is to a) fully fund the Spina Bifida Program at the National Center on Birth Defects and Developmental Disabilities at the Centers for Disease Control and Prevention, b) sign on to the Spina Bifida Caucus, and c) protect people’s access to wheelchair so-called “accessories” for manual wheelchairs.
Noticing a greater interest in Spina Bifida among our community and beyond, SBA sees the need to update the functionality of spinabifidaassociation.org and begins the process of creating a new website. The new spinabifidaassociation.org will allow SBA staff to quickly, accurately, and frequently update it with important news, informational content and materials, SBA programs and initiatives, events, and more. The new website will better serve our community and serve as SBA’s virtual front door.
The fourth edition of the Guidelines for the Care of People with Spina Bifida is finalized and distributed. The Guidelines are the culmination of three years of planning, literature review and content development by nearly 100 volunteers worldwide. The new Guidelines were needed to ensure that all people living with Spina Bifida receive the best and most up-to-date care possible and because previous versions did not have robust coverage of the care needs of adults. Additionally, the fourth version features a new title that reflects greater respect and understanding for the people who are impacted by living with Spina Bifida.
SB-YOU launches in response to feedback from the Adult Survey conducted in 2006. SB-YOU is a quarterly series of educational webinars that features topics of interest to adults with Spina Bifida, such as getting started with a physical fitness program, finding ways to manage and improve their mental health needs, being a parent, and strategies to live independently. The presentations are delivered by professionals in the subject and by adults with Spina Bifida who can provide their personal experiences and expertise in the subject.
…and more to come in 2019!
SBA will launch a mobile application to increase providing access to Guidelines for the Care of People with Spina Bifida.
SBA creates a version of the Guidelines for the Care of People with Spina Bifida written for non-medical audiences. This version will allow adults with Spina Bifida as well as parents and caregivers of children with Spina Bifida to take charge of their medical care by empowering them with the latest information about best practices in the care of people with Spina Bifida.
SBA launches SB Connect, a support group program managed by the Association designed to foster connections between people with Spina Bifida and their immediate families. SB Connect gatherings will take place in a relaxed environment that is available at regular, predictable intervals. The groups are about increasing friendships, networking, finding others who understand and helping all to thrive and grow. SB Connect is for people with Spina Bifida of all ages and their immediate families.
SBA will host its inaugural Spina Bifida Clinical Care meeting in Chicago, Illinois in association with Ann and Robert H. Lurie Children’s Hospital of Chicago. The meeting will be held in conjunction with the National Spina Bifida Patient Registry and Urologic Protocol Meeting. The gathering is a unique opportunity to learn from, be inspired by and share ideas with Spina Bifida clinic staff and care providers from across the country. The meeting will provide opportunities for physicians and allied health professionals to learn about approaches and techniques for clinical management, hear the latest information regarding the National Spina Bifida Patient Registry, and engage in dialogue and networking among peers.
Hold four regional Education Days in CA, NV, TN, and TX where families can hear from the best and brightest clinicians in the field, ask questions, and network with others.
Refine SB Connect, a program designed to build communities among people with Spina Bifida and their families. SB Connect will be available nationwide.
Develop an SBA Research Agenda using research gaps identified in the Guidelines for the Care of People with Spina Bifida and conduct quantitative and qualitative research with members of the Spina Bifida Community.
Measure care coordination activities in clinics—quantify those activities to aid clinics in advocating for full-time care coordinator.
Advance Transition to Adult Care efforts, with coalition formed, and with Spina Bifida Clinics
Continue work to identify care providers in Nevada
Together with the Spina Bifida Clinical Care Network Steering Committee, work to determine processes and care models that result in the highest standards of care and the best outcomes for the people they serve. This work will lead to the development of standardized criteria for a clinic to become an accredited care partner.