The White Sutton Syndrome Foundation

Broken Arrow, OK   |  https://whitesutton.org

Mission

The mission of the White Sutton Syndrome Foundation is to build a community that will improve the quality of life for those diagnosed with White Sutton Syndrome and their families, to educate others about this condition and to fund research in order to better understand its symptoms, treatments and prognosis.

Ruling year info

2019

President

Amanda Couch Mrs.

Vice President

Renea Banks Mrs.

Main address

PO Box 591

Broken Arrow, OK 74103 USA

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EIN

82-5373486

NTEE code info

Alliance/Advocacy Organizations (G01)

IRS filing requirement

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

Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

White-Sutton syndrome is a rare disease, and as such has a hard time attracting the attention needed to make medical progress. Our goal is to equip professionals and caregivers with the tools they need to effect real progress for those with White-Sutton syndrome.

Our programs

SOURCE: Self-reported by organization

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

Support

We administer several support forums with the goal of growing a community of individuals affected by White-Sutton Syndrome.

Population(s) Served
Caregivers

Where we work

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

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

The mission of the White Sutton Syndrome Foundation is to build a community that will improve the quality of life for those diagnosed with White Sutton Syndrome and their families, to educate others about this condition and to fund research in order to better understand its symptoms, treatments and prognosis.

Our strategies have been threefold, each intended to methodically address one of the goals in our mission statement. We have been building a community of families and caregivers through several online outlets (Facebook, RareConnect among them) and are holding an annual conference in Houston. That conference (along with regular updates to our website's research materials) is beginning to address our second goal, which is to educate others about White-Sutton syndrome. Our final goal (to fund research) is the most lofty, and not one we see ourselves achieving in the short term. However, we recently completed the White-Sutton syndrome patient-powered registry, which will enable researchers to have access to our patient population, and that's a strong foundation upon which we can build our future plans.

Our organization is very small at this point, and is an all-volunteer group. We hope to grow to the point where we can hire additional staff eventually. At this point, our volunteer corp are all well-positioned to help us succeed. Our president has a Master's degree in Applied Behavioral Analysis, and specialized in Autism. Our vice-president has two Masters degrees and currently heads the HR department at a leading special-needs employment center. Our treasurer has a Master's degree and works in the financial sector. Our secretary heads a department of graphic designers and has worked in multimedia production, event planning and social media marketing for more than a decade.

Despite being a small group, we are well-equipped to set the White Sutton Syndrome Foundation up for success.

We have built a website that is intended to be a useful tool for families facing a new diagnosis, and are consistently among the first few search results for "White-Sutton syndrome". We have built an online community of more than 160 caregivers that regularly support and encourage each other. We have recently completed a fully vetted and useful patient-powered registry. As is the case with almost all events this year, our first annual conference was cancelled, but we are in the beginning stages of planning a conference in 2021.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.
  • How is your organization collecting feedback from the people you serve?

    Suggestion box/email,

  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To inform the development of new programs/projects, To strengthen relationships with the people we serve,

  • What significant change resulted from feedback?

    We re-emphasized the development of our annual conference after hearing how important it was to many.

  • With whom is the organization sharing feedback?

    Our board,

  • Which of the following feedback practices does your organization routinely carry out?

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback,

Financials

The White Sutton Syndrome Foundation
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Operations

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

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Connect with nonprofit leaders

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  • Analyze a variety of pre-calculated financial metrics
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The White Sutton Syndrome Foundation

Board of directors
as of 3/31/2021
SOURCE: Self-reported by organization
Board chair

Amanda Couch

Amanda Couch

Josh Couch

Renea Banks

Daunte Banks