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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KOOLEN DE VRIES SYNDROME FOUNDATION

Board of directors
as of 02/25/2022
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

Organizational demographics

SOURCE: Self-reported; last updated 10/27/2021

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

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data