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 & President

Bina Shah

Main address

600 Third Avenue, 42nd Floor

New York, NY 10016 USA

Show more contact info

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

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

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

Financials

Project 8P 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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  • Compare nonprofit financials to similar organizations

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Project 8P Foundation

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

Bina Shah

Mehul Shah

Maulin Shah

Shannon Clarke

Thomas Peterson

Jahn Marie Surette

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 2/9/2022

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
Asian American/Pacific Islanders/Asian
Gender identity
Female, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

 

Sexual orientation

No data

Disability

No data