The Global Foundation for Peroxisomal Disorders

Family. Research. Hope.

aka GFPD   |   Tulsa, OK   |  www.thegfpd.org

Mission

The mission of The Global Foundation for Peroxisomal Disorders is to improve the lives of individuals with peroxisomal disorders by funding research, championing scientific collaboration, and assisting families and professionals through educational programs and support services.

Ruling year info

2011

Executive Director

Melissa Bryce Gamble

Main address

P.O. Box 33238

Tulsa, OK 74153 USA

Show more contact info

EIN

27-3646193

NTEE code info

Fund Raising and/or Fund Distribution (G12)

Diseases, Disorders, Medical Disciplines N.E.C. (G99)

Birth Defects, Genetic Diseases Research (H20)

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

SOURCE: Self-reported by organization

Families who have received a diagnosis of a peroxisomal disorder in the Zellweger spectrum, (including those formally known as Neonatal Adrenoleukodystrophy (NALD) and Infantile Refsum Disease (IRD)) are often limited to resources and support. Through connections with medical and scientific professionals and family support networks, our foundation is a resource for families. There is also limited research in these specific areas of disease. With further research, we can improve the quality of life for those affected by these diseases and ultimately extend the life of the children and possibly find a cure. Our foundation funds scientific grants related to the Zellweger spectrum.

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?

Family Support

Family-centered activities like support groups, an equipment exchange, a biennial family conference, annual regional meetups, as well as access to researchers and physicians help our families cope with the daily challenges of caring for a child with a terminal disease.

Population(s) Served
Caregivers
People with diseases and illnesses

We promote hope for families by actively pursuing the development of therapeutic treatments with our partners at the National Institutes of Health (NIH), USC Keck School of Medicine, Baylor College of Medicine, and McGill University.
Additionally, we fund research grants, coordinate our annual scientific conference, collaborate on projects with other organizations in the rare disease space, host a family registry, and publish treatment guidelines.

Population(s) Served
Academics
People with diseases and illnesses

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 overall donors

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

People with disabilities, People with hearing impairments, People with vision impairments

Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Context Notes

Total number of individual donors in each year.

Number of first-time donors

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

People with disabilities, People with hearing impairments, People with vision impairments

Type of Metric

Input - describing resources we use

Direction of Success

Increasing

Context Notes

These figures represent the number of first-time donors over the past 9 years.

Total number of grants awarded

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

People with disabilities, People with hearing impairments, People with vision impairments

Related Program

Scientific Initiatives Program

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

The number of grants The GFPD awarded each year.

Number of attendees present at rallies/events

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

People with disabilities, People with hearing impairments, People with vision impairments

Related Program

Family Support

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Represents the total number of people who attended GFPD events, including: fundraisers, scientific conferences, family gatherings, patient conferences, etc.

Total dollar amount of grants awarded

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

People with disabilities, People with hearing impairments, People with vision impairments

Related Program

Scientific Initiatives Program

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Total dollar amount of grands awarded to our scientific community in a given year.

Number of families who report that service and support staff/providers are available and capable of meeting family needs

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

People with disabilities, People with hearing impairments, People with vision impairments

Related Program

Family Support

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Context Notes

Number of times families accessed our family support facilitators to answer questions, listen to concerns and educate about resources offered by the GFPD and other organizations.

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.

The work of the GFPD is focused on family, research, and hope. Family-centered activities like support groups, an equipment exchange, a biennial family conference, annual regional meetups, as well as access to researchers and physicians help our families cope with the daily challenges of caring for a child with a terminal disease. However, to cope alone, is not enough. We promote hope for families by actively pursuing the development of therapeutic treatments with our partners at the National Institutes of Health
(NIH), USC Keck School of Medicine and McGill University.

Additionally, we fund research grants, coordinate our annual scientific conference, collaborate
on projects with other organizations in the rare disease space, host a family registry, and publish
treatment guidelines.

Community Advisory Council and Scientific Initiatives Committee established in February
2017.
 Family and Scientific Conferences held every other year. Over 110
scientists and physicians along with nearly 200 family members gather together to
collaborate and seek treatments for peroxisomal disorders.
 Development of a new mouse model with PBD-ZSD at Jackson Laboratories to help test
treatments for the central nervous system component of PBD-ZSD.
 Collaborations with the National Organization for Rare Diseases (NORD) and Global
Genes to extend our reach in the rare disease space.
 Supported research by funding a fellowship at the National Center for Advancing
Translational Sciences. This collaboration with NCATS will fund a post-doctoral position
to run high throughput drug screening, which will search through catalogs of thousands
of already FDA approved drugs and compounds to see if any improve peroxisome
function.

We have a strong staff and committee structure. Our current committees include: Governance, Finance, Community Advisory Council, Scientific Initiatives Committee, Scientific Advisory Board, and Development. Our board members and volunteers are actively involved in the ensuring the mission of the GFPD is accomplished. We have supportive families in our community who are committed to annual fundraisers to benefit the GFPD to help further our mission as well.

The GFPD was founded on October 5th, 2010 by a small but dedicated group of parents of
children affected by peroxisomal biogenesis disorder.  These parents (our first Board members)
were passionate about finding ways to improve the lives of patients with peroxisomal disorders
and promote and fund research to develop a greater understanding of peroxisomal disorders.

Since 2010, we have grown our patient registry from 48 patients, to today serving over 400
families worldwide who have a living or deceased child with a peroxisomal disorder. Today, our
Board consists of Tulsa, Oklahoma, based professionals as well as parents of children with a
peroxisomal disorder.

Future plans include expanding our family support initiatives and continuing to work towards robust treatment options for peroxisomal disorders.

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.
  • Who are the people you serve with your mission?

    Families, caregivers and individuals effected by peroxisomal disorders.

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

    Electronic surveys (by email, tablet, etc.), Focus groups or interviews (by phone or in person), Constituent (client or resident, etc.) advisory committees, Suggestion box/email,

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

    To identify and remedy poor client service experiences, 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,

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board,

  • 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 look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive,

  • What challenges does the organization face when collecting feedback?

    It is difficult to find the ongoing funding to support feedback collection,

Financials

The Global Foundation for Peroxisomal Disorders
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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

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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.

The Global Foundation for Peroxisomal Disorders

Board of directors
as of 9/29/2021
SOURCE: Self-reported by organization
Board chair

Kelly Dauer-Hubschmitt

Janssen Pharmaceutical

Term: 2021 - 2022

David Lapidus

LapidusData

Meghan Meyers

Luthercare

Brian Tims

Eide Bailly LLP

Corin Chapman

State Farm

Dennis Carlson

BP

Chad Johnson

ADB Companies

Erica Golle

Bergen County Technical Schools

Josh Mateffy

Wynne Mateffy Research Foundation & BlackEdge Capital

Chris Ostertag

Ascension Healthcare

Natalie Clouse

Bradley & Riley PC

Carolina Alfaro

California State University

Karoline Bethea-Jones

Sisters Helping Sisters

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? Yes

Organizational demographics

SOURCE: Self-reported; last updated 09/23/2021

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
Decline to state
Sexual orientation
Decline to state
Disability status
Decline to state

Race & ethnicity

Gender identity

 

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 09/21/2021

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 ask team members to identify racial disparities in their programs and / or portfolios.
  • We analyze disaggregated data and root causes of race disparities that impact the organization's programs, portfolios, and the populations served.
  • We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
  • We disaggregate data by demographics, including race, in every policy and program measured.
  • 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.
  • 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.