Basic Organization Information
Turner Syndrome Society of the United States
- Also Known As:
-
TSSUS
- Physical Address:
-
Houston, TX
77065 9916
- EIN:
-
41-1596910
- Web URL:
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www.turnersyndrome.org
- NTEE Category:
-
G Disease, Disorders, Medical Disciplines
-
G03 Professional Societies, Associations
-
W Public, Society Benefit
-
W01 Alliance/Advocacy Organizations
-
None
- Year Founded:
-
1986
- Ruling Year:
-
1988
- How This Organization Is Funded:
-
Individual Contributions - $75,000
-
Grants - $130,000
-
Memberships - $35,000
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Mission Statement
The Turner Syndrome Society US is the national organization to create awareness, promote research and provide support to all those touched by Turner syndrome.
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Impact Statement
Our vision is to "Crush Ignorance of Turner syndrome by 2019". Over 3/4 of the girls with TS are not diagnosed until the age of 11-14 years old. This delay of diagnosis creates a gap in health care as well as reduces the quantity and quality of health options.
Our Society works with our many volunteers to:
* Increase public awareness and understanding of Turner syndrome.
* Increase understanding by those affected by Turner syndrome by educating them about TS and its associated social and medical effects.
* Work together with medical and health-care professionals to research TS.
Revenue and Expenses
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Financial Statements
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Chief Executive
Mrs. Cindy Scurlock
Term:
Since
Mar
2007
Chief Executive Profile:
Cindy Scurlock has first hand knowledge of TS as she is the mother of a daughter with TS. She has a M.A. in community counseling and a B.A. in psychology. She has over 13 years experience with the TSSUS organization. Her close association with TS and the various needs surrounding the populations give her a unique perspective.
CEO/Executive Director Statement:
The Turner Syndrome Society of the US is a part of a larger international organization that is made up of over 60 countries. We work collaboratively to create a consistent description of TS, connect top specialists for research and knowledge bases, connect people needing services and share resources. In the US, women with TS cannot qualify for private health insurance, cannot obtain life insurance and many doctors must be educated about the condition by the patients themselves. We empower women and parents to be proactive in healthcare needs and advocate for those that don't know how or can't for themselves. My daughter has TS and I know first hand the joys of overcoming obstacles and the sadness of seeing opportunities fail. A strong support system is vital to making important health choices as well as feeling understood. We're a successful organization with strong women and families leading the way.
Cindy Scurlock
Officers for Fiscal Year
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Highest Paid Employees & Their Compensation
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Program:
Crush Ignorance
- Budget:
-
--
- Category:
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Diseases, Disorders & Medical Disciplines
- Population Served:
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Females, all ages or age unspecified
Program Description:
TSSUS has mailed over 35,000 brochures nationwide for early detection in Turner Syndrome.
Program Long-Term Success:
Program Short-Term Success:
Program Success Monitored by:
Program Success Examples:
Funding Needs
We have many wishes but our core programs are budgeted around $375,000 annually. We are focused on a TS Registry for 2011 and are grateful to all the individual donors and groups that fundraise for the Society. Please contact the office for specific funding needs for the current or upcoming year. National money is distributed to many cities across the nation for support of local programing.
Volunteer Needs
We have an ongoing list of "task" force type projects for those not comfortable with a long term committment. We are always searching for board members that want to contribute skills and talent to the Society.
Request for In-Kind Contributions
Our conferences and local events are packed with educational sessions and we enjoy offering our attendees information on resources or items that make them smile. If you have a business that would like to contribute locally or nationally we would be grateful to discuss ideas. Currently we have legal advisors, a PR firm and a graphics company that offer their services at no cost or for a substantially reduced fee and we appreciate the contributions.