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Stxbp1 Foundation

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

EIN: 821439459 ✦ Holly springs, NC ✦ Designated as a 501(c)(3)

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Overview

What is Stxbp1 Foundation?

The Stxbp1 Foundation is a nonprofit organization situated in Holly Springs, North Carolina. Their primary focus is on increasing awareness and driving research into disorders linked to STXBP1 mutations. They accomplish this by funding multiple preclinical grants to various organizations and advocating for improved early detection of these disorders. The foundation provides resources to families affected by STXBP1-related diseases, helping them understand the condition and get involved in related initiatives. Furthermore, they strive to foster activism and influence policies in favor of orphaned diseases, ultimately aiming to enhance the lives of families impacted by STXBP1 mutations.


Official website here: www.stxbp1disorders.org

What are the reviews and ratings of this charity?

Charity Navigator Rating: 92%, Four-Star out of Four Stars

The STXBP1 Foundation has earned a robust Four-Star rating from Charity Navigator, highlighting its commitment to accountability and finance. The organization scored particularly well in areas such as having a fully independent board and maintaining transparent financial practices. However, it is noted that the foundation is missing policies on whistleblowing and document retention, which could enhance its governance framework.

User reviews overwhelmingly reflect positive experiences, with many families expressing profound gratitude for the support and community the foundation provides. Reviewers often mention the foundation as a vital resource for information and emotional support following an STXBP1 diagnosis, emphasizing its role in connecting families and funding research. The organization is praised for its effective fundraising and advocacy efforts, which aim to advance treatments and raise awareness of this rare genetic disorder.

Despite its strengths, the STXBP1 Foundation, like many nonprofits, may face challenges in addressing its governance gaps. Nonetheless, the testimonials from board members and clients alike showcase a dedicated community focused on making meaningful progress toward a cure, underscoring the foundation's importance to those affected by STXBP1-related disorders.


This AI summary has been generated from information found on Charity Navigator and Great Nonprofits.

Is Stxbp1 Foundation legitimate?

Stxbp1 Foundation is a legitimate nonprofit organization registered as a 501(c)(3) entity. Stxbp1 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.stxbp1disorders.org

What is the mission statement of Stxbp1 Foundation?

The Stxbp1 Foundation's mission is centered around raising awareness for disorders linked to STXBP1 mutations. They are committed to funding and driving research towards the discovery of a cure. The organization also provides resources to help families comprehend the disease and get involved. Advocacy is another key aspect of their mission, aimed at improving early detection. They foster activism to influence policies in favor of orphaned diseases with the ultimate goal of enhancing the lives of those affected by STXBP1 disorders.


Official website here: www.stxbp1disorders.org

Who is the CEO of Stxbp1 Foundation?

Charlene Son Rigby is the President of Stxbp1 Foundation.


Official website here: www.stxbp1disorders.org

What is the revenue of Stxbp1 Foundation?

Stxbp1 Foundation's revenue in 2022 was $1,830,890.


Official website here: www.stxbp1disorders.org

Who are the executives of Stxbp1 Foundation and what are their salaries?

There 30 volunteers at Stxbp1 Foundation.


Here are 8 key members and their salaries:


Charlene Son Rigby (President)
  • Compensation: $0
  • Related: $0
  • Other: $0
Melissa Hioco (Director, Development)
  • Compensation: $0
  • Related: $0
  • Other: $0
Jacqueline Steinberg (Vice President & Scientifi)
  • Compensation: $0
  • Related: $0
  • Other: $0
Heather Jones (Treasurer)
  • Compensation: $0
  • Related: $0
  • Other: $0
Jennifer Clatterbuck (Director, Community Engage)
  • Compensation: $0
  • Related: $0
  • Other: $0
Russ Novy (Director, Marketing & Bran)
  • Compensation: $0
  • Related: $0
  • Other: $0
Cristina Brennan (Secretary)
  • Compensation: $0
  • Related: $0
  • Other: $0
Jared Barnum (Director, Technology)
  • Compensation: $0
  • Related: $0
  • Other: $0


Official website here: www.stxbp1disorders.org

Where can I find the form 990 for Stxbp1 Foundation?

Stxbp1 Foundation's most recent form 990 was submitted in 2022 and can be accessed here.


Official website here: www.stxbp1disorders.org

Learn more at the official website: www.stxbp1disorders.org

Mission Statement of Stxbp1 Foundation

The Stxbp1 Foundation is dedicated to raising awareness about disorders linked to STXBP1 mutations. Their primary goal is to fund and drive research aimed at discovering a cure for these conditions. Beyond this, they provide resources and tools to help families comprehend the disease and understand how they can contribute. Advocacy is another key aspect of their mission, as they strive to improve early detection and advocate for policies in favor of orphaned diseases. Ultimately, the Stxbp1 Foundation aims to enhance the lives of families affected by STXBP1 mutations, fostering activism and fostering change.

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Impact




July, 2024

The Stxbp1 Foundation has made a significant impact by creating awareness about disorders associated with STXBP1 mutations, funding and driving research towards finding a cure, providing families with necessary tools to understand the disease and get involved, advocating for improved early detection, fostering activism to influence policies in favor of orphaned diseases, and ultimately improving the lives of STXBP1 families. The foundation has also funded multiple preclinical grants to various organizations, furthering research efforts in the field of STXBP1-related disorders. Overall, their work has been instrumental in advancing knowledge, support, and resources for those affected by STXBP1 mutations.




This information is meant to be a general summary of Stxbp1 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
$1,830,890 (2022)
Expenses
$509,216 (2022)
Efficiency

Other financial information:

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

  • Gross Receipts: $1,830,890

Assets and Liabilities:

  • Total Assets: $1,701,392
  • Total Liabilities: $99,962
  • Net Assets: $1,601,430

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Organization Details

Founding Year

2017

Principal Officer

Charlene Son Rigby

Main Address

PO BOX 1148, HOLLY SPRINGS, NC, 27540

NTEE Category

Code: G20 - Disease

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