Appendix Cancer / Pseudomyxoma Peritonei Research Foundation (ACPMP)

Inform. Research. Cure.

aka ACPMP   |   Washington, DC   |  http://www.acpmp.org

Mission

ACPMP's mission is (1) facilitating appendix cancer and pseudomyxoma peritonei patient and physician education, (2) issuing grants to fund promising research that will improve the understanding, diagnosis and treatment of appendix cancer and pseudomyxoma peritonei, and (3) finding a cure for every patient diagnosed with pseudomyxoma peritonei and/or appendix cancer.

Ruling year info

2008

President

Jerry Lewandowski

Main address

2021 L Street NW Suite 101-244

Washington, DC 20036 USA

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Formerly known as

PMP Research Foundation PMPRF

EIN

26-2890160

NTEE code info

Fund Raising and/or Fund Distribution (T12)

Cancer (G30)

IRS filing requirement

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

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Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

The ACPMP Research Foundation is an IRS-designated 501(c)3 charitable organization. The Foundation was created in 2008 by a community of individuals affected by Pseudomyxoma Peritonei (PMP), Appendix Cancer, and related Peritoneal Surface Malignancies (PSM). Prior to the formation of ACPMP, no centralized organization existed that was dedicated to raising funds for distribution for PMP and appendix cancer research in an objective way. Private donations for PMP and appendix cancer research were primarily made to individual doctors rather than towards competitive, RFP-driven funding based on the quality of the science. ACPMP was created to fill this void and provide funding for research and educational programs focused on these diseases.

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 Grant Program

Appendix Cancer / Pseudomyxoma Peritonei Research Foundation (ACPMP) is dedicated to funding promising research for the diagnosis, treatment, and cure of appendix cancer and pseudomyxoma peritonei (PMP). The ACPMP Research Grant Program is administered by the National Organization for Rare Diseases (NORD). Grant recipients are selected by the NORD Medical Advisory Committee (https://rarediseases.org/about/leadership/medical-advisory-committee/).

Information and application forms for the ACPMP Research Grants available through NORD are available on the ACPMP or NORD website (rarediseases.org or acpmp.org). Questions or requests for application forms may be directed to (800) 999-NORD or [email protected]

Click here for more
information: https://rarediseases.org/for-clinicians-and-researchers/research-opportunities/requests-proposals/

Population(s) Served
Adults

The ACPMP Research Foundation provides physician scholarships to medical conferences to enable young physicians to learn more about PMP and Appendix Cancer and their optimal treatment.

Population(s) Served
Adults

The ACPMP Research Foundation plans, coordinates and sponsors educational events targeted to physicians and patients to enable these populations to learn more about Pseudomyxoma Peritonei and Appendix Cancer.

Population(s) Served
Adults

Where we work

Affiliations & memberships

National Organization for Rare Disorders - Member 2008

MyPART - NCI My Pediatric and Adult Rare Tumor network - Advocacy Partner 2019

Global Genes Rare Foundation Alliance - Member 2018

GI Cancers Alliance - Member 2018

NORD Rare Cancer Coalition - Member 2018

Our results

SOURCE: Self-reported by organization

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

Total number of grants awarded

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

People with diseases and illnesses

Related Program

Research Grant Program

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

Each two-year grant is $50,000, administered by the National Organization for Rare Disorders.

Total dollar amount of scholarship awarded

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

Adults

Related Program

Physician Scholarships

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

Scholarships granted to physicians and researchers for biennial International Workshop on Peritoneal Surface Malignancies and/or the annual Society for Surgical Oncology Advanced Cancer Therapies.

Number of public events held to further mission

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

People with diseases and illnesses

Related Program

Educational Event Sponsorship

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Physician/patient symposiums are held in partnership with specialist institutions.

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.

(1) Establish the first centralized charitable organization to fund PMP and appendix cancer research (goal achieved, July 2008).
(2) Raise $100,000 to award our first grant in 2009 (goal achieved, November 2009).
(3) Create and maintain a short list of priority research that will produce near-term results in improving the quality of life and curability of PMP and appendix cancer patients.
(4) Play a leading role in the dissemination of accurate information regarding PMP and appendix cancer both to the patient and to medical communities.
(5) Raise a minimum of $1 million to fund promising research within 3-5 years (goal achieved, December 2013).
(6) Help researchers find a cure for PMP and appendix cancer.

(1) Raise funds through events organized by the patient community.
(2) Partner with physicians and their institutions to facilitate the education of the medical and patient communities and improve the diagnosis and treatment of PMP.
(3) Partner with the National Organization for Rare Disorders (NORD) to administer the Research Grant Program to ensure funds are going to the highest and best use and to monitor usage of funds after grants are awarded.

The organization is composed of a volunteer board, with each member taking responsibility for a core area (Fundraising, Education, Research, and Communications). Fundraising is primarily achieved through a web-based platform that allows the patient community to set up fundraising events and collect donations. The organization also has two full-time staff members.

ACPMP Research Foundation has awarded $1,300,000 in the form of twenty-seven research grants since 2008 that have resulted in 17 published studies in peer-reviewed journals, with another $100,000 to be issued at the end of 2020. We have co-hosted and sponsored annual patient-physician symposiums from coast to coast across the United States, and awarded physician scholarships to major international medical and scientific conferences focused on the understanding and treatment of appendix cancer and PMP. We will continue these efforts as we pursue our goal of finding a cure for every patient diagnosed with appendix cancer and/or pseudomyxoma peritonei.

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 collecting feedback from the people you serve?

    Constituent (client or resident, etc.) advisory committees,

  • 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 identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve,

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board, Our funders,

  • 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

Appendix Cancer / Pseudomyxoma Peritonei Research Foundation (ACPMP)
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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

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Appendix Cancer / Pseudomyxoma Peritonei Research Foundation (ACPMP)

Board of directors
as of 5/20/2021
SOURCE: Self-reported by organization
Board chair

Jerry Lewandowski

No Affiliation

James Carroll

No Affiliation

Judith Culbertson

No Affiliation

Susan Ortega

No Affiliation

John Ziss

No Affiliation

Deborah Shelton

No affiliation

Jerry Lewandowski

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? Not applicable
  • 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? Not applicable
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Not applicable
  • 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 5/20/2021,

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

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

Disability

No data