Disease, Disorders, Medical Disciplines

The Global Foundation for Peroxisomal Disorders

Family. Research. Hope.

aka GFPD

Tulsa, OK

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

2011

Executive Director

Melissa Bryce Gamble

Main Address

P.O. Box 33238

Tulsa, OK 74153 USA

Keywords

Research Funding, Family Support, Patient Advocacy, Rare Disease Research, Genetic Disorder Research

EIN

27-3646193

 Number

1533288532

Cause Area (NTEE Code)

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.

Sign in or create an account to view Form(s) 990 for 2018, 2017 and 2016.
Register now

Social Media

Programs + Results

What we aim to solve

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

What are the organization's current programs, how do they measure success, and who do the programs serve?

SOURCE: Self-reported by organization

Family Support

Scientific Initiatives Program

Where we work

Our Results

How does this organization measure their results? It's a hard question but an important one. These quantitative program results are self-reported by the organization, illustrating their committment to transparency, learning, and interest in helping the whole sector learn and grow.

SOURCE: Self-reported by organization

Number of overall donors

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

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

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

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

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

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.

Charting Impact

Five powerful questions that require reflection about what really matters - results.

SOURCE: Self-reported by organization

What is the organization aiming to accomplish?

What are the organization's key strategies for making this happen?

What are the organization's capabilities for doing this?

How will they know if they are making progress?

What have they accomplished so far and what's next?

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.

We have program evaluation tools for both family and scientific initiatives.

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

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

Source: Self-reported by organization

the feedback loop
check_box We demonstrated a willingness to learn more by reviewing resources about feedback practice.
check_box We shared information about our current feedback practices.
How is the organization collecting feedback?
We regularly collect feedback through: 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 the organization using feedback?
We use feedback to: 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?
We share feedback with: the people we serve, our staff, our board.
What challenges does the organization face when collecting feedback?
It is difficult to: it is difficult to find the ongoing funding to support feedback collection.

External Reviews

Financials

The Global Foundation for Peroxisomal Disorders

Need more info on this nonprofit?

Need more info on this nonprofit?

FREE: Gain immediate access to the following:

  • Address, phone, website and contact information
  • Forms 990 for 2018, 2017 and 2016
  • A Pro report is also available for this organization.

See what's included

Operations

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

Need more info?

FREE: Gain immediate access to the following:

  • Address, phone, website and contact information
  • Forms 990 for 2018, 2017 and 2016
  • A Pro report is also available for this organization.

See what's included

Board Leadership Practices

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section, which enables organizations and donors to transparently share information about essential board leadership practices.

SOURCE: Self-reported by organization

BOARD ORIENTATION & 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 & 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

Organizational Demographics

In order to support nonprofits and gain valuable insight for the sector, GuideStar worked with D5—a five-year initiative to advance diversity, equity, and inclusion in philanthropy—in creating a questionnaire. This section is a voluntary questionnaire that empowers organizations to share information on the demographics of who works in and leads organizations. To protect the identity of individuals, we do not display sexual orientation or disability information for organizations with fewer than 15 staff. Any values displayed in this section are percentages of the total number of individuals in each category (e.g. 20% of all Board members for X organization are female).

SOURCE: Self-reported by organization

Gender

Sexual Orientation

This organization reports that it does not collect this information for Board Members and Full-Time Staff.

Disability

This organization reports that it does not collect this information for Board Members and Full-Time Staff.

Diversity Strategies

close
We track retention of staff, board, and volunteers across demographic categories
close
We track income levels of staff, senior staff, and board across demographic categories
close
We track the age of staff, senior staff, and board
close
We track the diversity of vendors (e.g., consultants, professional service firms)
close
We have a diversity committee in place
close
We have a diversity manager in place
close
We have a diversity plan
close
We use other methods to support diversity