Overview
What is Spina Bifida Association Of America?
The Spina Bifida Association of America is a nonprofit organization situated in Arlington, Virginia. Its mission is to create a brighter future for individuals affected by spina bifida, encompassing education, advocacy, research, and service. The association works collaboratively with various stakeholders, including medical professionals, parents, and adults with spina bifida, to improve healthcare through the Spina Bifida Collaborative Care Network (SBCCN). This network aims to monitor, track, and evaluate care provided in spina bifida clinics and other healthcare settings. Additionally, the organization collaborates with the National Center on Birth Defects and Developmental Disabilities to conduct research through the National Spina Bifida Patient Registry (NSBPR). The association's activities and mission are centered around providing information, facilitating research, and educating professionals to enhance the lives of individuals living with spina bifida.
Official website here: www.spinabifidaassociation.org
What are the reviews and ratings of this charity?
Charity Navigator Rating: 99%, Four-Star out of Four Star rating
The Spina Bifida Association of America (SBAA) has achieved a high level of accountability and financial health, as indicated by its Four-Star rating from Charity Navigator. With an impressive score of 99%, the organization demonstrates strong governance practices, including a wholly independent board and rigorous financial oversight. Their performance in program expenses and fundraising efficiency showcases a commitment to channeling resources effectively towards their mission.
User feedback reflects both admiration for the SBAA's impact and some criticisms regarding its operations. Many reviews praise the association for its educational programs, community support, and advocacy efforts that significantly benefit individuals living with spina bifida. Participants highlight the importance of the SBAA in providing resources, organizing conferences, and fostering connections among those affected by the condition, indicating that it fulfills an essential role in the community.
However, not all feedback is positive; some users express dissatisfaction with the national organization's funding distribution and operational transparency. Critical voices raise concerns about the financial priorities, noting discrepancies in how funds are allocated versus the needs expressed by local chapters. This suggests that while the SBAA is valuable to many, there are areas for improvement in its national strategies that could enhance its effectiveness and community trust.
This AI summary has been generated from information found on Charity Navigator and Great Nonprofits.
Is Spina Bifida Association Of America legitimate?
Spina Bifida Association Of America is a legitimate nonprofit organization registered as a 501(c)(3) entity. Spina Bifida Association Of America submitted a form 990, which is a tax form used by tax-exempt organizations in the U.S., indicating its operational transparency and adherence to regulatory requirements. Donations to this organization are tax deductible.
Heare are some key statistics you may want to consider:
Executive Compensation: $441,149
Professional Fundraising Fees: $0
Other Salaries and Wages: $757,510
For more financial information, click here
Official website here: www.spinabifidaassociation.org
What is the mission statement of Spina Bifida Association Of America?
The Spina Bifida Association of America has a mission to construct a better and brighter future for individuals impacted by spina bifida. This is achieved through providing information about the birth defect and related conditions, offering support to those living with it, conducting research into the causes, effects, and treatments of spina bifida, and educating and training professionals involved in its treatment. The association works towards these goals through initiatives like the Spina Bifida Collaborative Care Network, which aims to improve health care for people with spina bifida and continues research through the National Spina Bifida Patient Registry. The network also produces guidelines for the care of individuals with spina bifida, utilizing data from the patient registry.
Official website here: www.spinabifidaassociation.org
Who is the CEO of Spina Bifida Association Of America?
Sara Struwe is the CEO of Spina Bifida Association Of America The CEO's salary of Spina Bifida Association Of America is $141,598 and their total compensation is $163,477.
Official website here: www.spinabifidaassociation.org
What is the revenue of Spina Bifida Association Of America?
Spina Bifida Association Of America's revenue in 2023 was $2,834,510.
Official website here: www.spinabifidaassociation.org
Who are the executives of Spina Bifida Association Of America and what are their salaries?
The average compensation at Spina Bifida Association Of America during 2023 was $79,911. There are 15 employees and 680 volunteers at Spina Bifida Association Of America.
Here are 17 key members and their salaries (Spina Bifida Association Of America's CEO's salary is $141,598 and their total compensation is $163,477):
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- Compensation: $114,488
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- Other: $21,709
Official website here: www.spinabifidaassociation.org
Where can I find the form 990 for Spina Bifida Association Of America?
Spina Bifida Association Of America's most recent form 990 was submitted in 2023 and can be accessed here.
Official website here: www.spinabifidaassociation.org
Learn more at the official website: www.spinabifidaassociation.org
Mission Statement of Spina Bifida Association Of America
The Spina Bifida Association of America is dedicated to creating a brighter future for individuals affected by spina bifida and related conditions. Their mission encompasses four key areas: providing information, advocacy, research, and service. They strive to educate the public about spina bifida, offering support to those living with this birth defect through various means.
In terms of education, the Spina Bifida Association of America works tirelessly to disseminate knowledge about spina bifida and its associated conditions. They foster an environment of learning and understanding, not only for individuals living with the condition but also for healthcare professionals involved in its treatment.
Furthermore, the association is committed to facilitating research into the causes, effects, and treatment of spina bifida. They collaborate with various organizations, including the Centers for Disease Control and Prevention (CDC), to continue research through the National Spina Bifida Patient Registry (NSBPR). This collaborative effort enables the collection and analysis of data, ultimately leading to advancements in the understanding and treatment of spina bifida.
Additionally, the Spina Bifida Association of America focuses on service, providing support to individuals living with spina bifida through their Spina Bifida Collaborative Care Network (SBCCN). This network brings together a diverse group of individuals, including SBA staff, chapter leaders, doctors, nurses, psychologists, parents of children with spina bifida, and adults with spina bifida. By working together, they aim to improve healthcare for people with spina bifida, establish a system for monitoring and evaluating care, and produce guidelines for the treatment of spina bifida based on research from the NSBPR.
In summary, the Spina Bifida Association of America is a nonprofit organization that is passionate about improving the lives of individuals affected by spina bifida and related conditions. They achieve this by providing education, advocating for research, and offering support through their services. By collaborating with various organizations and individuals, they aim to advance the understanding and treatment of spina bifida, ultimately leading to a brighter future for those affected by this birth defect.
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Impact
July, 2024
The Spina Bifida Association of America's impact is significant in the field of healthcare and research related to spina bifida. Through initiatives like the Spina Bifida Collaborative Care Network (SBCCN), the organization has been pivotal in improving the health care of individuals with spina bifida. By bringing together a diverse group of stakeholders, including medical professionals, researchers, and individuals with spina bifida, the SBCCN has developed guidelines for the care of people living with spina bifida. Additionally, their collaboration with the National Center on Birth Defects and Developmental Disabilities has led to the continuation of research through the National Spina Bifida Patient Registry (NSBPR).
Overall, the Spina Bifida Association of America's efforts in research, clinical care, and advocacy have contributed to building a better and brighter future for all those impacted by spina bifida. Their work not only provides support and information to individuals living with spina bifida but also facilitates important research into the causes, effects, and treatment of this birth defect.
This information is meant to be a general summary of Spina Bifida Association Of America. Please take the time to review official sources before making any decisions based upon the content provided here.
Financials
This financial information is from Propublica.
Other financial information:
This information is from the most recently submitted tax form from this organization, which was in 2023.
- Investment Income: $15,488
- Program Service Revenue: $623,689
- Gross Receipts: $3,458,122
Assets and Liabilities:
- Total Assets: $1,417,977
- Total Liabilities: $403,752
- Net Assets: $1,014,225
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Programs
Programs are reported by nonprofits in their tax forms and are normally their tax-exempt activities.
CONFERENCE AND MEETIN
Revenue
$331,360
SPECIAL EVENTS
Revenue
$292,329
Organization Details
Founding Year
1973
Principal Officer
Sara Struwe
NTEE Category
Code: G55Z - Disease
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