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

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

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

No target populations selected

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

No target populations selected

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

No target populations selected

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

No target populations selected

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

No target populations selected

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

No target populations selected

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.

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.

2017 Highlights

Community Advisory Council and Scientific Initiatives Committee established in February
2017.
 Family and Scientific Conference, featuring Francis Collins, Director of National Institutes
of Health as Keynote Speaker, held in Washington, D.C. in July 13th-17th 2017. Over 110
scientists and physicians along with nearly 200 family members gathered 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.
  • 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,

  • 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 11/22/2019
SOURCE: Self-reported by organization
Board chair

Corin Chapman

State Farm

Term: 2019 - 2020

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? No