THE PARENT PROJECT FOR MUSCULAR DYSTROPHY RESEARCH INC

aka PPMD   |   Hackensack, NJ   |  www.parentprojectmd.org

Mission

Parent Project Muscular Dystrophy’s mission is to end Duchenne. We accelerate research, raise our voices in Washington, demand optimal care for all young men, and educate the global community.

Ruling year info

1994

Principal Officer

Pat Furlong

Main address

401 Hackensack Avenue - 9th Floor

Hackensack, NJ 07601 USA

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EIN

31-1405490

NTEE code info

Alliance/Advocacy Organizations (G01)

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

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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?

End Duchenne

Objectives: Research
To identify and aggressively fund the most promising near and long-term Duchenne research and cutting-edge therapies.
To stimulate new research to ensure that the therapeutic pipeline is rich with opportunity.
To encourage and support the pharmaceutical industry to maximize their investment in Duchenne.
Advocacy
To ensure the patient’s voice is heard in Washington, DC, so policies lead to improvements in the lives of families affected by Duchenne and reflect the needs of the whole community.
To work with the National Institutes of Health and other agencies to ensure that Duchenne research and clinical trials remain a high priority.
To work with federal regulatory agencies so they address Duchenne-specific concerns in their decision-making.
Care
To identify gaps in care for young men with Duchenne and work toward solutions.
To work with clinicians and other health care professionals across the globe to ensure all Duchenne patients have access to optimal care.
Community
To provide a supportive environment in which people affected by Duchenne can share needs, concerns, and common experiences.
To work collaboratively with stakeholders who make up the Duchenne population and to participate actively and effectively in the international Duchenne community.
Education
To increase recognition of muscle weakness among healthcare professionals and promote early diagnosis.
To share up-to-date information about treatment and care options with all members of the Duchenne community.
To raise awareness about Duchenne and provide educational materials to the global community.

Population(s) Served
Families

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 conference attendees

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

Health

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Due to COVID-19, our 2020 Annual conference was virtual, which allowed greater access and a large increase in participation than previous years.

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.

Research

*To identify and aggressively fund the most promising near and long-term Duchenne research and cutting-edge therapies.
*To stimulate new research to ensure that the therapeutic pipeline is rich with opportunity.
*To encourage and support the pharmaceutical industry to maximize their investment in Duchenne.

Advocacy

*To ensure the patient’s voice is heard in Washington, DC, so policies lead to improvements in the lives of families affected by Duchenne and reflect the needs of the whole community.
*To work with the National Institutes of Health and other agencies to ensure that Duchenne research and clinical trials remain a high priority.
*To work with federal regulatory agencies so they address Duchenne-specific concerns in their decision-making.

Care

*To identify gaps in care for young men with Duchenne and work toward solutions.
* To work with clinicians and other health care professionals across the globe to ensure all Duchenne patients have access to optimal care.

Community

* To provide a supportive environment in which people affected by Duchenne can share needs, concerns, and common experiences.
* To work collaboratively with stakeholders who make up the Duchenne population and to participate actively and effectively in the international Duchenne community.

Education

*To increase recognition of muscle weakness among healthcare professionals and promote early diagnosis.
*To share up-to-date information about treatment and care options with all members of the Duchenne community.
*To raise awareness about Duchenne and provide educational materials to the global community.

* Maintain funding and federal support of the Wellstone Centers of Excellence by continuing to show the effectiveness of these centers amongst the Duchenne community.
* Lead and develop first of its kind patient initiated draft guidance on Duchenne for the FDA and Industry, ultimately to inform the FDA about the current landscape in Duchenne and to encourage them to write an official Duchenne guidance.
* Decreasing the time and cost of clinical testing for new Duchenne therapeutics through support of clinical infrastructure.
* Improving the chances that a drug entering clinical testing for Duchenne will result in an approved therapeutic.
* Identify gaps in care and services for individuals and families living with Duchenne.
* Identifying and addressing the current cardiac needs of people living with Duchenne.
* Address the outstanding educational needs of patients and families.
* Understand the perspectives and preferences of patients and families related to managing Duchenne.

* Passage of the Amendments to 2001 MD-CARE Act in the House, schedule to be voted on by Senate in Fall 2014 with PPMD advocates urging Senators to support with home visits during recess.
* PPMD develops process and methodology for creating draft guidance, formalizes structure, (steering committee ,working groups, professional writer, project manager) and creates timeline. Develops Community Advisory Board to oversee and participate in the process.
* Development of biomarkers and new clinical endpoints for Duchenne muscular dystrophy.
* Funding multiple therapeutic strategies to treat Duchenne through a unique and rigorous review process.
* Creation of the Certified Duchenne Care Center Program to certify centers across the US capable of providing comprehensive care and services to individuals living with Duchenne; communicate this information to the Duchenne Community at large.
* Proposed meeting organized in conjunction with NHLBI to address contemporary cardiac issues in Duchenne.
* Conduct analysis of needs and gaps related to outstanding educational needs of patients and families.
* Conduct research to evaluate perspectives and preferences of patients and families related to managing Duchenne.

* MD-CARE Act Amendments are approved by both Houses of Congress, and signed into law by the President.
* FDA writes official draft guidance on Duchenne, accepting majority of content submitted by community. PPMD sets precedent for other rare diseases.
* Number of trials of novel therapeutics for Duchenne has increased from 1 in 2004 to 16 in 2014.
* PPMD-funded pilot study of a drug approved for another purpose led directly to a 300 person phase III clinical trial for Duchenne by the original drug developer.
* Seven Certified Duchenne Care Centers to be named this year.
* Small groups organized to address areas of need in cardiac care and research: development of cardiac care guidelines in Duchenne, standardization of operating procedures in animal research, organizing infrastructure that would further facilitate human research.
* Evolve to responding to new, emerging and anticipated (within the next ~12m) educational needs of patients and families.
* Perspectives and preferences of patients and families related to managing Duchenne become integrated into regulatory decision making.

Financials

THE PARENT PROJECT FOR MUSCULAR DYSTROPHY RESEARCH INC
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Operations

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

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THE PARENT PROJECT FOR MUSCULAR DYSTROPHY RESEARCH INC

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

Anessa Gaydou-Fehsenfeld

No Affiliation

Rasha Alnaibari

No Affiliation

Jeffrey Bigelow

No Affiliation

Linda Cripe

No Affiliation

Anessa Fehsenfeld

No Affiliation

Jonathan Finder

No Affiliation

Lance Hester

No Affiliation

David Hofstein

No Affiliation

Joanna Johnson

No Affiliation

Christopher Jones

No Affiliation

John Killian

No Affiliation

Richard Klein

No Affiliation

Colin Rensch

No Affiliation

Donna Saccamanno

No Affiliation

Beth White

No Affiliation

Howard Kaplan

No Affiliation

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 ? Yes
  • 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

Organizational demographics

SOURCE: Self-reported; last updated 3/29/2021

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

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female
Disability status
Person without a disability

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data