Smith-Kingsmore Syndrome Foundation

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

EIN: 842913037 ✦ Liberty twp, OH ✦ Designated as a 501(c)(3)

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Overview

What is Smith-Kingsmore Syndrome Foundation?

The Smith-Kingsmore Syndrome Foundation is a nonprofit organization situated in Liberty Township, Ohio. Their primary mission is to fund research aimed at enhancing the understanding of Smith-Kingsmore syndrome, with the long-term goal of discovering a potential cure. They have recently invested in two research projects, one at the University of Florida and another at the University of California-Davis, allocating a total of $93,764. The goal is to both deepen the fundamental knowledge of the syndrome and expedite the application of existing drugs for managing its associated medical issues. To further disseminate information about Smith-Kingsmore syndrome, the Foundation translated its patient/provider guide into twelve languages. They also organized community meetings in English, Spanish, and Portuguese, collaborated with other patient organizations on a survey, and presented their research findings at a national conference. With a $600K grant from the CZI Rare As One Project, the organization aims to reinforce its operational capabilities and foster a harmonious collaboration between patients and researchers. The Foundation is led by a dedicated workforce of one individual.


Official website here: www.smithkingsmore.org

Is Smith-Kingsmore Syndrome Foundation legitimate?

Smith-Kingsmore Syndrome Foundation is a legitimate nonprofit organization registered as a 501(c)(3) entity. Smith-Kingsmore 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: $81,865
Professional Fundraising Fees: $0
Other Salaries and Wages: $0

For more financial information, click here


Official website here: www.smithkingsmore.org

What is the mission statement of Smith-Kingsmore Syndrome Foundation?

The Smith-Kingsmore Syndrome Foundation's mission is centered around funding research to enhance our understanding of the syndrome and discover effective treatments. Their ultimate goal is to improve the quality of life for patients and, eventually, find a cure. To achieve this, they have secured a significant grant to boost their organizational capacity and foster collaboration between patients and researchers. The foundation's efforts include funding various research projects, both for long-term cure development and near-term applications to manage and treat the syndrome's medical issues. Additionally, they work on disseminating information about Smith-Kingsmore syndrome in multiple languages, hosting community meetings, and collaborating with other organizations to improve patient care and quality of life.


Official website here: www.smithkingsmore.org

Who is the CEO of Smith-Kingsmore Syndrome Foundation?

Sarah Lepore is the Executive Director of Smith-Kingsmore Syndrome Foundation.


Official website here: www.smithkingsmore.org

What is the revenue of Smith-Kingsmore Syndrome Foundation?

Smith-Kingsmore Syndrome Foundation's revenue in 2023 was $74,750.


Official website here: www.smithkingsmore.org

Who are the executives of Smith-Kingsmore Syndrome Foundation and what are their salaries?

The average compensation at Smith-Kingsmore Syndrome Foundation during 2023 was $81,865. There is 1 employee and 10 volunteers at Smith-Kingsmore Syndrome Foundation.


Here are 9 key members and their salaries:


Susan Dando (Executive Director)
  • Compensation: $81,865
  • Related: $0
  • Other: $0
Matt Walsh (Director)
  • Compensation: $0
  • Related: $0
  • Other: $0
Eric Kelly (Director)
  • Compensation: $0
  • Related: $0
  • Other: $0
Dan Lepore (Director)
  • Compensation: $0
  • Related: $0
  • Other: $0
Cass Briggs (Director)
  • Compensation: $0
  • Related: $0
  • Other: $0
Sarah Lepore (President)
  • Compensation: $0
  • Related: $0
  • Other: $0
Nazira Kelly (Vice President)
  • Compensation: $0
  • Related: $0
  • Other: $0
Kristen Groseclose (Director Of Development)
  • Compensation: $0
  • Related: $0
  • Other: $0
Mike Groseclose (Treasurer And Interim Secreta)
  • Compensation: $0
  • Related: $0
  • Other: $0


Official website here: www.smithkingsmore.org

Where can I find the form 990 for Smith-Kingsmore Syndrome Foundation?

Smith-Kingsmore Syndrome Foundation's most recent form 990 was submitted in 2023 and can be accessed here.


Official website here: www.smithkingsmore.org

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

Mission Statement of Smith-Kingsmore Syndrome Foundation

The Smith-Kingsmore Syndrome Foundation is dedicated to funding research to enhance our understanding of Smith-Kingsmore syndrome and discovering treatments that can improve patients' quality of life. Their ultimate goal is to find a cure for this syndrome. With a substantial grant from the Chan Zuckerberg Initiative's Rare As One Project, this nonprofit aims to strengthen its organizational capacity and unite patients and researchers.

The foundation has invested in two research projects this year, one at the University of Florida and another at the University of California-Davis. These projects, funded to the tune of $93,764, focus on both gaining a deeper understanding of the syndrome for potential long-term cure prospects and exploring the use of FDA-approved drugs for managing and treating the most pressing medical issues associated with Smith-Kingsmore syndrome in the near future.

Beyond research, the Smith-Kingsmore Syndrome Foundation has also worked to expand the availability of scientific and health information about the syndrome. They have translated the patient/provider guide into twelve languages and conducted community meetings in English, Spanish, and Portuguese. Additionally, they have collaborated with other patient organizations to develop a quality-of-life/research survey and presented their research findings at a national research/clinician conference. The foundation's comprehensive approach to addressing Smith-Kingsmore syndrome aims to support patients and researchers while pushing for advancements in understanding and treatment.

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Impact




August, 2024

The Smith-Kingsmore Syndrome Foundation is making a significant impact in the field of medical research and patient care. This year, the foundation funded two research projects at prestigious institutions, totaling an investment of $93,764. These projects aim to advance the understanding of Smith-Kingsmore syndrome, with the ultimate goal of finding a cure. Additionally, the foundation has expanded its outreach efforts by translating important resources into multiple languages, hosting community meetings, and collaborating with other patient organizations on quality-of-life surveys. By actively engaging in research and education initiatives, the foundation is working towards improving patient outcomes and enhancing the overall quality of life for individuals affected by Smith-Kingsmore syndrome.




This information is meant to be a general summary of Smith-Kingsmore 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
$74,750 (2023)
Expenses
$224,706 (2023)
Efficiency

Other financial information:

This information is from the most recently submitted tax form from this organization, which was in 2023.

  • Gross Receipts: $74,750

Assets and Liabilities:

  • Total Assets: $509,150
  • Total Liabilities: $62,984
  • Net Assets: $446,166

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Organization Details

Founding Year

2019

Principal Officer

Sarah Lepore

Main Address

5903 Franklin Trl, Liberty Twp, OH, 45011

NTEE Category

Code: G80 - Disease

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