PLATINUM2024

Project 8p Foundation

Together towards Treatment

New York, NY   |  https://project8p.org/

Mission

Project 8p Foundation's mission is to empower a unified community for chromosome 8p heroes for a meaningful life today while accelerating treatments for tomorrow.

Ruling year info

2019

Founder & CEO

Bina Shah

Main address

31 West 52nd Street 14th floor

New York, NY 10019 USA

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EIN

83-2545342

NTEE code info

Birth Defects (G20)

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?

Research Program

Funding researchers to help us understand the causes of the disorder and inform the prognosis. Identify drug or therapeutic treatments.

Population(s) Served
People with disabilities
People with intellectual disabilities

Where we work

Videos

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of clinic sites

This metric is no longer tracked.
Totals By Year
Population(s) Served

Children and youth, Young adults

Related Program

Research Program

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Number of overall donors

This metric is no longer tracked.
Totals By Year
Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

Constant innovation and creativity are required to solve our puzzle. We prioritized 4 key goals. Moreover, we need to build capacity to grow our operations. The 4 goals are interdependent and will inform our decisions and overall impact.

1. Accelerate Research for 8p Related Disorders
- Fund sponsored research to support innovations and identify therapeutic targets
- Build a robust data platform with the Chromosome 8p Registry to leverage knowledge into meaningful outcomes for 8p heroes
- Partner with established and emerging Key Opinion Leaders (“KOLs”)

2. Deliver a High Quality Standard of Care
- Build evidence to define high quality of care for 8p heroes
- Manage and maintain a scalable Neurogenetics Multidisciplinary Clinical Research Network
- Gather intelligence from families to inform patient needs and research priorities

3. Partner with Global Difference Makers
- Solidify diversified and sustainable funding sources
- Educate our investors about their value in our collective global impact
- Create community activation partnerships

4. Empower Community
- Provide education and advocacy tools to the patient community
- Significantly increase and maintain engagement with a user experience (“UX”) that transforms into a sustainable patient-led and patient-centered platform
- Define content strategies for the patient community that connect to and influence the broader community

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 shared information about our current feedback practices.

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

    To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals

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

    We collect feedback from the people we serve at least annually, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We share the feedback we received with the people we serve, We tell the people who gave us feedback how we acted on their feedback, We ask the people who gave us feedback how well they think we responded

  • What challenges does the organization face when collecting feedback?

    The people we serve tell us they find data collection burdensome, It is difficult to find the ongoing funding to support feedback collection, It is difficult to identify actionable feedback

Financials

Project 8p Foundation
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Operations

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

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lock

Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • 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.

Project 8p Foundation

Board of directors
as of 04/12/2024
SOURCE: Self-reported by organization
Board chair

Bina Shah

Jahn Marie Surette

Wissam Nesr

David Jackson

Erica Seaborne

Nancy Dominguez

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? Not applicable

Organizational demographics

SOURCE: Self-reported; last updated 3/24/2024
info Candid has made improvements to the race and ethnicity options.

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

Race & ethnicity
Asian/Asian American
Gender identity
Female, Not transgender
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

No data

Disability

Equity strategies

Last updated: 03/24/2024

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We review compensation data across the organization (and by staff levels) to identify disparities by race.
  • We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
Policies and processes
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.