Malan Syndrome Foundation Inc

Let's Grow hope together

Old Bridge, NJ   |  malansyndrome.org

Mission

The mission of the Malan Syndrome Foundation is to improve the lives of individuals and families affected by Malan syndrome in the global community through support, outreach and research. ​ ​ Provide a broad network of support to families affected by Malan syndrome and help advance access to a diagnosis Promote knowledge development, awareness and sharing of information Explore research pathways to treatments and cures, as well as enhance understanding of Malan syndrome and related disorders

Ruling year info

2019

Co-founder and President

Kimberly Ventarola

Co-founder and Vice President

Christal Delagrammatikas

Main address

15 Wendy Dr

Old Bridge, NJ 08857 USA

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EIN

83-3063901

NTEE code info

Single Organization Support (T11)

Specifically Named Diseases (G80)

Specifically Named Diseases (G80)

IRS filing requirement

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

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?

Patient Registry

Help increase the undestanding of Malan Syndrome by registering your child in the Malan Syndrome Patient Registry.

Population(s) Served
Adults

Where we work

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.

  • How is your organization collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), Focus groups or interviews (by phone or in person), Suggestion box/email,

  • How is your organization using feedback from the people you serve?

    To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To strengthen relationships with the people we serve,

  • With whom is the organization sharing feedback?

    The people we serve, Our board,

  • Which of the following feedback practices does your organization routinely carry out?

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback,

Financials

Malan Syndrome Foundation Inc

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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
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

Malan Syndrome Foundation Inc

Board of directors
as of 02/22/2022
SOURCE: Self-reported by organization
Board chair

Kimberly Ventarola

Malan Syndrome Foundation

Term: 2018 - 2021

Kimberly Ventarola

Malan Syndrome Foundation

Christal Delagrammatakis

Malan Syndrome Foundation

Bradilyn Johnson

Malan Syndrome Foundation

Susan Amass

Malan Syndrome Foundation

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? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Not applicable
  • 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? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes

Organizational demographics

SOURCE: Self-reported; last updated 2/16/2021

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

Leadership

No data

The organization's co-leader identifies as:

No data

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data