APBD RESEARCH FOUNDATION

Brooklyn, NY   |  www.apbdrf.org

Mission

TO FUND MEDICAL RESEARCH FOR TREATMENT AND PUBLIC EDUCATION

Ruling year info

2007

President

Emil Weiss

Main address

2257 East 63rd Street

Brooklyn, NY 11234 USA

Show more contact info

EIN

20-3609790

NTEE code info

(Brain Disorders) (H48)

IRS filing requirement

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

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Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Fund raising and grant applications in order to continue the research.

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?

APBD registry

Registry available for patients to join.

Population(s) Served
Adults

Where we work

Affiliations & memberships

Chan Zuckerberg Initiative 2020

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.

The primary foci of the APBD Research Foundation are to support research toward finding a cure for the disease, reach out to the medical profession and to persons with symptoms who are unaware of the disease, and to provide guidance to APBD patients and family members. In this context, the following are among the major accomplishments of the Foundation during the past 12 months.

· Supporting over a dozen medical research studies by 7 doctor/principal investigators who are working in hospital labs in New York City; Majorca, Spain; Oxford, England; Toronto; and Tel Aviv.
· The research studies address a range of issues related to the disease, including reduction of glycogen synthsase, stabilization of glycogen branching enzymes, long-term dissolution and elimination of polyglucosan bodies from the nervous system, and drug development.
· Made contacts with and initiated discussions with a major pharmaceutical company toward undertaking a drug trial.
· Continued to maintain and utilize the APBD scientific advisory board, which reviews and approves all research proposals as a condition of funding.

Incoming new board members with fund raising capabilities

Expanded the Board from 4 to 9 active directors.
· Upgraded the Foundation's policies and procedures to comply with New York State's new “Revitalization Act" which took effect July 1, 2014.
· Developed our first boilerplate proposal for soliciting grants from foundations.

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?

    Paper surveys,

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

    patient updates,

  • What significant change resulted from feedback?

    Able to distinguish misdiagnoses and upgrade outreach initiatives

  • With whom is the organization sharing feedback?

    Our staff, Our board,

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

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback, The people we serve tell us they find data collection burdensome,

Financials

APBD RESEARCH 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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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.

APBD RESEARCH FOUNDATION

Board of directors
as of 10/9/2021
SOURCE: Self-reported by organization
Board co-chair

Emil Weiss


Board co-chair

Dr. Jeff Levenson

APBDRF

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 06/02/2020

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

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Male, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person with a disability

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 06/02/2020

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 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 engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.