Disease, Disorders, Medical Disciplines

Spina Bifida Texas

aka SBTX

San Antonio, TX

Mission

To improve the lives of those affected by Spina Bifida and to promote its prevention through folic acid awareness.

Ruling Year

1977

Executive Director

Ms. Nora A Oyler

Program Director

Rosanne Quintero MS

Main Address

1550 NE Loop 410 Suite 224

San Antonio, TX 78209 USA

Keywords

spina bifida, disabilities, folic acid, birth defects, support, education

EIN

74-1936785

 Number

8008562228

Cause Area (NTEE Code)

Birth Defects (G20)

Human Service Organizations (P20)

IRS Filing Requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Programs + Results

What we aim to solve New!

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Our programs

What are the organization's current programs, how do they measure success, and who do the programs serve?

SOURCE: Self-reported by organization

FashionAble

Quality of Life Sponsorships & Scholarships

Folic Acid Awareness

Resource Library

Spina Bifida Education & Support

Where we workNew!

Our Results

How does this organization measure their results? It's a hard question but an important one. These quantitative program results are self-reported by the organization, illustrating their committment to transparency, learning, and interest in helping the whole sector learn and grow.

SOURCE: Self-reported by organization

Total number of works commissioned

TOTALS BY YEAR
Population(s) served

Children and youth (0-19 years)

Related program

FashionAble

Context notes

FashionABLE has produced several garments for children with physical limitations.

Total number of works exhibited

TOTALS BY YEAR
Population(s) served

Children and youth (0-19 years)

Related program

FashionAble

Context notes

100% of the garments that were started in the FashionABLE program, have been completed. All models (children with disabilities) came away from FashionABLE with a useful and fashionable garment.

Charting Impact

Five powerful questions that require reflection about what really matters - results.

SOURCE: Self-reported by organization

What is the organization aiming to accomplish?

What are the organization's key strategies for making this happen?

What are the organization's capabilities for doing this?

How will they know if they are making progress?

What have and haven't they accomplished so far?

The goal of Spina Bifida Texas is to enhance the lives of those affected by Spina Bifida through education and increased advocacy efforts. We strive to eliminate all preventable cases of Spina Bifida through education and folic acid awareness. Our objective among those in our community is to promote independence and build self-esteem through education, resource sharing, and programming for individuals with Spina Bifida, their families, educators and the community.

SBTX plans to sustain and expand services with a dual focus on the prevention of Spina Bifida through educational outreach and support services for families and children. We seek to promote independence and build self-esteem through education, resource sharing, and programming for individuals with Spina Bifida, their families, educators, and the community. Because our programs and services are not duplicated, we continue to be the only resource in our community.

Because Spina Bifida happens in the first 28 days of a pregnancy and because 50% of pregnancies are unplanned, we will work diligently to educate women of childbearing age about the importance of taking folic acid every day to reduce their risk of having a baby with Spina Bifida. Research estimates that approximately 70% of Spina Bifida cases could have been prevented by folic acid supplementation prior to pregnancy. Additional outreach is essential to further increase awareness. Combined with focusing on women who are actively trying to conceive, our educational strategy also focuses on connecting with women at bridal shows, community health fairs, and medical clinics well before they are planning to become pregnant.

SBTX will expand services to provide support, information and fellowship to families affected by this complex disability. Because the diagnosis of Spina Bifida can be overwhelming for new families, we provide them with a “New Parent Packet" which contains information on medical issues associated with this complex disability as well as with information on community resources and funding for the families. Volunteer veteran parents meet with the family and give them the much needed encouragement and support during this trying time. SBTX works with families to encourage and support them to be advocates for their child's education by assisting them through the Admission Review and Dismissal (ARD) process at their respective school district. The SBTX Resource library is another service we provide. The Resource Library is updated and stocked with books and publications on various topics associated with Spina Bifida. These resources are accessible free of charge to families and the general public. The Lending Closet is supplied with donated medical supplies such diapers and catheters for families in need. Our “On the Right Tract" program provides parents and professionals with tools that include step by step instructions to help teach children about personal hygiene and self-catheterization skills, an area of independence training that is always hard to accomplish with the Spina Bifida community. The FashionABLE program brings high school fashion design students together with children with disabilities. The designers create and modify clothing to accommodate each child's unique physical limitation. As part of the process the families and designers collaborate to come up with innovative modifications that will assist the child in their daily dressing needs.

Spina Bifida Texas has continually developed its education and support programs and services over the last 17 yrs. Our New Parent Support, Resource Library and Lending Closet help parents to cope with this complex disability on a daily basis. The Annual Spina Bifida Conference allows families to educate themselves on not only the medical issues involved but also on issues regarding socialization, education and independence. Our family programs and support group services help build bonds and partnerships within the Spina Bifida community. Our folic acid awareness campaigns include interactive activities that engage women so they can understand the positive affects of folic acid in promoting their health and the health of their future unborn child.

Spina Bifida Texas is constantly evaluating and tracking its outreach. Family programs and services are reviewed through entrance and exit questionnaires. The folic acid outreach is measured through tallying of connections to women of childbearing age, follow up surveys and tracking vitamin distribution.

Since 1999, the number of families reached annually in our service area has risen from 80 families to over 750 individual families in Central and South Texas alone. Annually we reach over 100 families at our Spina Bifida Conference and at the first annual SB Day this year, we had over 400 individuals in attendance.
Our folic acid awareness message reaches over 2,000 women annually at the bridal and health fairs and we distribute vitamins to over 250 brides on Valentines day.

External Reviews

Financials

Spina Bifida Texas

Fiscal year: Jan 01 - Dec 31

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Operations

The people, governance practices, and partners that make the organization tick.

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  • Forms 990 for 2016, 2015 and 2014
A Pro report is also available for this organization for $125.
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Board Leadership Practices

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section, which enables organizations and donors to transparently share information about essential board leadership practices.

SOURCE: Self-reported by organization

BOARD ORIENTATION & EDUCATION

Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations?

Not Applicable

CEO OVERSIGHT

Has the board conducted a formal, written assessment of the chief executive within the past year?

Not Applicable

ETHICS & TRANSPARENCY

Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year?

Not Applicable

BOARD COMPOSITION

Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?

Not Applicable

BOARD PERFORMANCE

Has the board conducted a formal, written self-assessment of its performance within the past three years?

Not Applicable