KOOLEN DE VRIES SYNDROME FOUNDATION

aka SUPPORTING FAMILIES WITH KOOLEN DE VRIES SYNDROME   |   Wilmington, NC   |  kdvsfoundation.org

Mission

To educate, increase awareness and promote research for the support and enrichment of individuals living with Koolen-de Vries Syndrome and their families.

Ruling year info

2013

President, Board of Directors

Ashley Point

Main address

609A Piner Road Suite 319

Wilmington, NC 28409 USA

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EIN

46-3208388

NTEE code info

Specifically Named Diseases (G80)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Programs and results

What we aim to solve

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Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Cellular therapy research

Ongoing research into using drug therapies to effect the synaptic responses in KDVS patients

Population(s) Served
Adults

Where we work

Our Sustainable Development Goals

SOURCE: Self-reported by organization

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Financials

KOOLEN DE VRIES SYNDROME FOUNDATION
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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  • Analyze a variety of pre-calculated financial metrics
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KOOLEN DE VRIES SYNDROME FOUNDATION

Board of directors
as of 7/9/2021
SOURCE: Self-reported by organization
Board chair

Ashley Point

Andy Speirs

Alayna Hayman

Steven Tiberg

Angela de Jong

Neal Deremer

Mandy Bylund

Ashley Point

Alicia Holcombe

Kaci Fisher

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? No
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? No
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? No
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? No
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? No

Organizational demographics

SOURCE: Self-reported; last updated 11/12/2020,

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

No data

Race & ethnicity

No data

Gender identity

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Sexual orientation

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Disability

No data