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Koolen-De Vries Syndrome Foundation

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

EIN: 463208388 ✦ Wilmington, NC ✦ Designated as a 501(c)(3)

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Overview

What is Koolen-De Vries Syndrome Foundation?

The Koolen-De Vries Syndrome Foundation is an international organization, headquartered in Wilmington, North Carolina, dedicated to fostering research in various fields related to Koolen-De Vries Syndrome (KDVS). Their mission involves supporting, informing, and connecting individuals and professionals affected by or interested in KDVS. They achieve this through various activities such as patient advocacy summits, social gatherings, and providing information to both the general public and medical professionals. The foundation also supports research in areas like clinical, drug therapy, speech therapy, and epilepsy, aiming to advance knowledge and potential treatments for KDVS.


Official website here: www.kdvsfoundation.org

Is Koolen-De Vries Syndrome Foundation legitimate?

Koolen-De Vries Syndrome Foundation is a legitimate nonprofit organization registered as a 501(c)(3) entity. Koolen-De Vries 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.kdvsfoundation.org

What is the mission statement of Koolen-De Vries Syndrome Foundation?

The Koolen-De Vries Syndrome Foundation is an international organization that supports, informs, and networks with individuals affected by Koolen-De Vries Syndrome (KDVS) and interested professionals. Their activities include hosting social gatherings, organizing patient advocacy summits, supporting research related to KDVS, and providing information about the syndrome to both the general public and medical professionals. The foundation aims to foster a community of support and knowledge sharing for those impacted by KDVS.


Official website here: www.kdvsfoundation.org

Who is the CEO of Koolen-De Vries Syndrome Foundation?

Gabriel Stagner is the Vice-President of Koolen-De Vries Syndrome Foundation.


Official website here: www.kdvsfoundation.org

What is the revenue of Koolen-De Vries Syndrome Foundation?

Koolen-De Vries Syndrome Foundation's revenue in 2022 was $237,465.


Official website here: www.kdvsfoundation.org

Who are the executives of Koolen-De Vries Syndrome Foundation and what are their salaries?

There 9 volunteers at Koolen-De Vries Syndrome Foundation.


Here are 9 key members and their salaries:


Alayna Haynam (Vice-President)
  • Compensation: $0
  • Related: $0
  • Other: $0
Ashley Point (President)
  • Compensation: $0
  • Related: $0
  • Other: $0
Cindy Asbury (Board Member)
  • Compensation: $0
  • Related: $0
  • Other: $0
Emily Lemke (Board Member)
  • Compensation: $0
  • Related: $0
  • Other: $0
Gabriel Stagner (Treasurer)
  • Compensation: $0
  • Related: $0
  • Other: $0
Jessica Collier (Board Member)
  • Compensation: $0
  • Related: $0
  • Other: $0
Kaci Fisher (Board Member)
  • Compensation: $0
  • Related: $0
  • Other: $0
Neal Dermerer (Board Member)
  • Compensation: $0
  • Related: $0
  • Other: $0
Maria Luisa Valentin De Solis (Board Member)
  • Compensation: $0
  • Related: $0
  • Other: $0


Official website here: www.kdvsfoundation.org

Where can I find the form 990 for Koolen-De Vries Syndrome Foundation?

Koolen-De Vries Syndrome Foundation's most recent form 990 was submitted in 2022 and can be accessed here.


Official website here: www.kdvsfoundation.org

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

Mission Statement of Koolen-De Vries Syndrome Foundation

The Koolen-De Vries Syndrome Foundation is an international organization dedicated to supporting, informing, and networking with individuals affected by Koolen-De Vries Syndrome (KDVS) and interested professionals. Their mission is multifaceted, encompassing various activities designed to foster a sense of community and advance understanding of KDVS.

Firstly, the Foundation organizes social gatherings, offering a platform for individuals and families affected by KDVS to connect, share experiences, and provide mutual support. Secondly, they conduct Patient Advocacy Summits, where stakeholders discuss and advocate for the needs and rights of those with KDVS. The Foundation is also committed to supporting research in the field, contributing to a better understanding of KDVS and potential treatments.

In addition to these activities, the Koolen-De Vries Syndrome Foundation disseminates information about KDVS to both the general population and medical professionals. This helps to raise awareness and ensure that individuals with KDVS receive appropriate care and support. By engaging in these activities, the Foundation plays a crucial role in supporting and empowering those affected by Koolen-De Vries Syndrome.

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Impact




October, 2024

Koolen-De Vries Syndrome Foundation plays a crucial role in enhancing the lives of those impacted by Koolen-De Vries Syndrome (KDVS) through various initiatives. Its commitment to support, inform, and connect individuals and families affected by KDVS fosters a strong sense of community.

By organizing social gatherings and patient advocacy summits, the Foundation creates valuable opportunities for families to share experiences and build networks. These gatherings not only provide emotional support but also empower individuals to advocate for their needs and rights.

The Foundation's dedication to research is vital in advancing the understanding of KDVS. By promoting studies in clinical fields, drug therapy, speech therapy, and epilepsy, it aims to improve treatment options and outcomes for individuals living with KDVS. Moreover, educating both the general public and medical professionals about KDVS ensures that individuals with this condition receive informed care and understanding from those around them.

Overall, the impact of the Koolen-De Vries Syndrome Foundation extends beyond immediate support; it fosters research, creates community connections, and promotes awareness, leading to a better quality of life for those affected by KDVS.




This information is meant to be a general summary of Koolen-De Vries 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
$237,465 (2022)
Expenses
$41,563 (2022)
Efficiency

Other financial information:

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

  • Investment Income: $7
  • Gross Receipts: $237,465

Assets and Liabilities:

  • Total Assets: $599,559
  • Total Liabilities: $0
  • Net Assets: $599,559

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Organization Details

Founding Year

2013

Principal Officer

Gabriel Stagner

Main Address

609A PINER ROAD 319, WILMINGTON, NC, 28409

NTEE Category

Code: G80 - Disease

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