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The Wiedemann-Steiner Syndrome Foundation

Learn about this cause: What are the reviews? Is it Legit? Do I like the mission? What is the CEO's salary?

EIN: 811260031 ✦ Sacramento, CA ✦ Designated as a 501(c)(3)

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Overview

What is The Wiedemann-Steiner Syndrome Foundation?

The Wiedemann-Steiner Syndrome Foundation, situated in Sacramento, California, is a dedicated nonprofit organization. Their primary mission is to educate individuals affected by Wiedemann-Steiner Syndrome, a rare genetic condition, and advocate for ongoing scientific research to improve their lives. To achieve this, they leverage their network of family volunteers as regional ambassadors and engage in various outreach initiatives. They have hosted virtual events, such as monthly expert discussions and an annual WSS triathlon, to raise awareness of the syndrome. Furthermore, the foundation celebrates International WSS Awareness Day, contributing significantly to the WSS community.


Official website here: www.wssfoundation.org

What do the Facebook reviews say about The Wiedemann-Steiner Syndrome Foundation?

100% of the six reviewers on Facebook recommend The Wiedemann-Steiner Syndrome Foundation. Here’s a summary of their comments:

The foundation is praised for its dedicated efforts to advocate for individuals living with Wiedemann-Steiner Syndrome (WSS). Reviewers highlight the organization's supportive nature, describing it as encouraging and informative about the condition and the resources available to those affected. Their commitment to raising awareness is also noted, emphasizing that while WSS may not be widely recognized, the foundation is actively working to change that narrative.

Overall, the sentiment is overwhelmingly positive, indicating that the organization is fulfilling its mission effectively and making a meaningful impact in the lives of those it serves.


This AI summary has been generated from reviews found on Facebook.

Is The Wiedemann-Steiner Syndrome Foundation legitimate?

The Wiedemann-Steiner Syndrome Foundation is a legitimate nonprofit organization registered as a 501(c)(3) entity. The Wiedemann-Steiner Syndrome Foundation 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: $0
Professional Fundraising Fees: $0
Other Salaries and Wages: $0

For more financial information, click here


Official website here: www.wssfoundation.org

What is the mission statement of The Wiedemann-Steiner Syndrome Foundation?

The Wiedemann-Steiner Syndrome Foundation's primary objective is to educate individuals affected by Wiedemann-Steiner Syndrome, a rare genetic condition. The foundation also advocates for ongoing scientific research to improve the lives of those impacted by this syndrome. In fulfilling its mission, the Wiedemann-Steiner Syndrome Foundation provides education, fosters a supportive community, and stimulates research. They have expanded their reach through family volunteers acting as regional ambassadors and have organized various virtual activities to raise awareness of Wiedemann-Steiner Syndrome, such as monthly expert virtual discussions and an annual Wiedemann-Steiner Syndrome triathlon (held virtually).


Official website here: www.wssfoundation.org

Who is the CEO of The Wiedemann-Steiner Syndrome Foundation?

Libby Woolford is the President of The Wiedemann-Steiner Syndrome Foundation.


Official website here: www.wssfoundation.org

What is the revenue of The Wiedemann-Steiner Syndrome Foundation?

The Wiedemann-Steiner Syndrome Foundation's revenue in 2022 was $227,816.


Official website here: www.wssfoundation.org

Who are the executives of The Wiedemann-Steiner Syndrome Foundation and what are their salaries?

There 25 volunteers at The Wiedemann-Steiner Syndrome Foundation.


Here are 8 key members and their salaries:


Libby Woolford (President)
  • Compensation: $0
  • Related: $0
  • Other: $0
Thor Misko (Secretary)
  • Compensation: $0
  • Related: $0
  • Other: $0
Drew Schaefer (Treasurer)
  • Compensation: $0
  • Related: $0
  • Other: $0
Diego Mahecha (Board Member)
  • Compensation: $0
  • Related: $0
  • Other: $0
Christina O'Keeffe (Board Member)
  • Compensation: $0
  • Related: $0
  • Other: $0
Kim Lagravinese (Board Member)
  • Compensation: $0
  • Related: $0
  • Other: $0
Krystal Thurman (Board Member)
  • Compensation: $0
  • Related: $0
  • Other: $0
Annabel Corbett (Board Member)
  • Compensation: $0
  • Related: $0
  • Other: $0


Official website here: www.wssfoundation.org

Where can I find the form 990 for The Wiedemann-Steiner Syndrome Foundation?

The Wiedemann-Steiner Syndrome Foundation's most recent form 990 was submitted in 2022 and can be accessed here.


Official website here: www.wssfoundation.org

Learn more at the official website: www.wssfoundation.org

Mission Statement of The Wiedemann-Steiner Syndrome Foundation

The Wiedemann-Steiner Syndrome Foundation, a nonprofit organization, is dedicated to enlightening individuals affected by Wiedemann-Steiner Syndrome, a rare genetic condition. Its primary objective is to support and advocate for ongoing scientific research to enhance the lives of everyone impacted by this syndrome. The foundation achieves this mission by providing education, fostering a sense of community, and stimulating research.

In pursuit of its mission, the Wiedemann-Steiner Syndrome Foundation has expanded its reach through family volunteers serving as regional ambassadors. They have also hosted various virtual activities to raise awareness of the syndrome. These initiatives include monthly expert virtual discussions, aimed at educating the Wiedemann-Steiner Syndrome community. Additionally, the foundation organizes annual Wiedemann-Steiner Syndrome Triathlons, albeit virtually, and celebrates International Wiedemann-Steiner Syndrome Awareness Day. These events aim to increase understanding and support for individuals living with the syndrome.

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Impact




October, 2024

The Wiedemann-Steiner Syndrome Foundation has made a significant impact by elevating awareness and understanding of Wiedemann-Steiner Syndrome (WSS), a rare genetic condition. Through dedicated efforts to educate those affected, the foundation fosters a sense of community and support among individuals and families navigating the challenges associated with WSS.

By recruiting family volunteers to serve as regional ambassadors, the foundation has expanded its outreach, ensuring that information and resources reach those who need it most. The hosting of virtual activities, including monthly expert discussions, provides valuable opportunities for education and connection, allowing families to learn from specialists and share experiences.

Additionally, initiatives like the annual WSS triathlon and the International WSS Awareness Day play a crucial role in raising awareness on a broader scale. These events not only promote physical activity and community engagement but also shine a light on the experiences of those living with WSS, contributing to a greater understanding of the condition.

Overall, the foundation's commitment to supporting ongoing scientific research and advocating for affected individuals significantly enhances the lives of those impacted by Wiedemann-Steiner Syndrome, driving progress in education, community building, and scientific inquiry.




This information is meant to be a general summary of The Wiedemann-Steiner Syndrome Foundation. 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.

Revenue
$227,816 (2022)
Expenses
$125,225 (2022)
Efficiency

Other financial information:

This information is from the most recently submitted tax form from this organization, which was in 2022.

  • Investment Income: $758
  • Gross Receipts: $227,816

Assets and Liabilities:

  • Total Assets: $647,196
  • Total Liabilities: $412
  • Net Assets: $646,784

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Organization Details

Founding Year

2016

Principal Officer

Libby Woolford

Main Address

1314 44TH STREET, SACRAMENTO, CA, 95819

NTEE Category

Code: G11 - Disease

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