GLUT1 DEFICIENCY FOUNDATION

help and hope for the Glut1 Deficiency community

aka G1D Foundation   |   Owingsville, KY   |  www.G1DFoundation.org

Mission

The Glut1 Deficiency Foundation is a non-profit family organization dedicated to improving the lives of those in the Glut1 Deficiency community through its mission of increased awareness, improved education, advocacy for patients and families, and support and funding for research.

Ruling year info

2011

Executive Director

Glenna Spencer Steele

Main address

PO Box 737

Owingsville, KY 40360 USA

Show more contact info

Formerly known as

glut1ds.org

EIN

45-2190535

NTEE code info

Fund Raising and/or Fund Distribution (G12)

Alliance/Advocacy Organizations (G01)

Specifically Named Diseases (G80)

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

Glut1 Deficiency is a rare genetic condition which causes a wide range of symptoms and has a heavy impact on quality of life for patients who struggle with its effects. G1D and its symptoms are caused by faulty transport of glucose into the brain, which interferes with proper brain function and development. Unlike many rare conditions, however, there is a treatment for G1D that often brings a profound improvement in symptoms - a ketogenic diet. The earlier patients are diagnosed, the sooner proper treatment can be started and ineffective and even harmful treatments can be avoided. Early diagnosis and treatment is a patient's best chance at the most normal development and the best quality of life. Unfortunately, because G1D is rare, there are gaps in awareness and knowledge among the public and with medical professionals, which leaves many patients undiagnosed or misdiagnosed. There is a shortage of research and funding that could lead to better understanding and outcomes.

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?

Biennial Conference on Glut1 Deficiency

The G1D Foundation holds biennial conferences to give families, professionals, and researchers the opportunity to come together to meet, share, and learn.

Population(s) Served
Families

Through its Find Some1 with Glut1 program, the G1D Foundation exhibits at major national and international medical conferences in order to raise awareness and educate those in the healthcare field who are in a position to help diagnose patients or to help better understand and treat them.

Population(s) Served
Adults

The G1D Foundation provides seed money for innovative research which can lead to better understanding of Glut1 Deficiency, better treatments, and a cure.

Population(s) Served
Adults

The Glut1 Deficiency Foundation helped fund the creation of the G1D Patient Registry and had input on the design. We educate families and professionals about the registry through a variety of methods and encourage participation. We continue to support the maintenance with annual donations to the host researcher.

Population(s) Served
People with diseases and illnesses
People with disabilities

Our Education and Awareness campaign is an important part of our mission. We have multiple online resources and communicate information and important updates through our mailing list and quarterly newsletters. We have print materials we mail to families and professionals, including a welcome packet program to new families who sign up for our mailing list.

Population(s) Served
People with diseases and illnesses
People with disabilities

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 patients diagnosed

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

People with diseases and illnesses, People with disabilities

Related Program

Find Some1 with Glut1

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

The number of patients diagnosed has steadily increased since the Foundation was formed. Researchers estimate 1,200 currently diagnosed with 1-2 new patients being diagnosed weekly.

Number of conference attendees

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

Families, People with diseases and illnesses, People with disabilities

Related Program

Biennial Conference on Glut1 Deficiency

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Our G1D conference attendance, now held biennially, has grown steadily, and so has the number of individual families represented each year. Attendance growth enhances our educational efforts.

Total number of grants awarded

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

People with diseases and illnesses, People with disabilities

Related Program

Research Grant Program

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

The G1D Foundation aims to support diverse projects from established researchers and also those new to the field. Our goal is to steadily increase the number of grants as well as the dollar amounts.

Total dollar amount of grants awarded

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

People with diseases and illnesses, People with disabilities

Related Program

Research Grant Program

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Our research grant program is an important part of our mission to support and fund research. Our goal is to continue to increase the number of grants and the total dollar amounts awarded.

Number of people on the organization's email list

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

Families, People with diseases and illnesses, People with disabilities

Related Program

Education and Awareness

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Our email list has grown from 45 patients and family members when the Foundation was formed to 789 currently. In addition, our professional and supporter mailing lists continues to increase.

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 Glut1 Deficiency Foundation is a non-profit family organization dedicated to improving the lives of those in the Glut1 Deficiency community through its mission of increased awareness, improved education, advocacy for patients and families, and support and funding for research.

INCREASED AWARENESS will help ensure more patients get a life-changing diagnosis and more families find support on this journey.

IMPROVED EDUCATION will help patients and families know what to expect and help medical professionals know how to diagnose and treat G1D.

ADVOCACY FOR PATIENTS AND FAMILIES will help ensure rights are protected, voices are heard, and lives are valued.

SUPPORT AND FUNDING FOR RESEARCH will help move progress along for better understanding, better treatments, and ultimately a cure.

We have several programs and projects we have created to help accomplish our mission.

For INCREASED AWARENESS and IMPROVED EDUCATION, we have developed a comprehensive website with our own resources and information as well as links to relevant outside resources. We have a video program in progress, sharing family stories and interviews with experts and researchers. We have developed printed materials we share as part of our Find Some1 with Glut1 program, where we exhibit at professional medical meetings and try to raise awareness of Glut1 Deficiency and educate on how to diagnose and treat it. We also share print materials with families through our Welcome Packet project, mailing a collection of resources to newly diagnosed families who sign up for our mailing list. We host biennial conferences on Glut1 Deficiency to educate families and professionals with the latest information and updates on research and clinical practice.

For our goal of ADVOCACY FOR PATIENTS AND FAMILIES, we work with other Glut1 Deficency groups, rare disease organizations, and service agencies to give our patient community a voice. We provide resources and assistance to patients and families who are navigating the G1D journey and need help with securing treatment, services, and information.

For our mission component of SUPPORT AND FUNDING FOR RESEARCH, the G1D Foundation supports and funds seed research projects through our Research Grant Program for better understanding, better treatments, and ultimately a cure. We also helped establish and currently help maintain and promote the G1D Registry at UT Southwestern Medical Center.

The Glut1 Deficiency Foundation is founded, organized, governed, and led by parents of Glut1 Deficiency patients, so all involved are motivated and driven to promote positive changes in the community. The Board of Directors, Executive Director, and committee members come from diverse backgrounds and geographical locations with well-rounded professional experiences including engineering, law, medicine, research, healthcare, accounting, industry, journalism, and education.

The G1D Foundation is also fortunate to have a Medical Advisory Board comprised of the top expert clinicians and researchers in the field of Glut1 deficiency, genetics, and the ketogenic diet. The MAB provides invaluable resources, guidance, and direction. In addition, the Scientific Advisory Board is made up of clinician/researchers and Glut1 Deficiency parents who are also physicians. The SAB helps guide our research initiatives and inform our research grant award program.

There is also an active and diverse family base supporting the G1D Foundation through committee service, volunteer efforts, and fundraising to help ensure the mission work continues and grows.

The G1D Foundation has support, resources, and leadership in place to continue to implement, evaluate, and improve our current programs and to look for new ways we can better serve the needs of our growing patient and family community.

Since the formation of the G1D Foundation, the number of patients diagnosed has increased steadily due in part to our efforts at raising awareness and improving education for the public and the medical community. Our goal is to continue to reach more who are in a position to help make a life-changing diagnosis. We have served hundreds of families and educated professionals from all over the world through our biennial conferences, our website and social media resources, and our Find Some1 with Glut1 educational exhibits. We hope to continue growing the numbers served and find ways to better identify and meet needs while we continue to share the latest information on research progress and best practice.

We have seated a MAB and will continue to work with them to develop resources and programs, including work that is underway to develop a Standard of Care consensus paper. We have worked on behalf of the G1D community through efforts with other G1D and rare disease organizations, including membership with NORD and initiatives with Eurordis. We have been engaged in efforts with the NIH and the FDA, providing insights and representation for G1D patients and families. Several Board members have met with congressional representatives to discuss support for issues around relevant to the community. We have assisted individual families with issues around insurance, medical care, school, and social services. We hope to continue to expand our involvement and relationships with other like-minded organizations so that the G1D community is represented and its voices are heard and to develop more advocacy resources for families.

To date, the Glut1 Deficiency Foundation has awarded just over $800,000 in seed research grants to several different institutions covering a variety of projects. We have seated a SAB, developed a formal grant award program, and hope to continue to grow both the dollar amounts awarded and the number of researchers supported. We helped fund and inform the creation of the G1D Registry and have and will continue to promote participation in the registry through a targeted campaign for families and professionals, hoping to see an increase in the number of patients represented as well as the quantity and quality of data in the registry.

Overall, we feel the G1D Foundation has made a positive impact on the community and the state of Glut1 Deficiency in the medical field. Parents and families have found support, education and awareness have been increased, more patients have been diagnosed and properly treated, and research has been enhanced by more funding and more diverse investigations. Our goal for the future is to continue to grow our programs and find ways to identify and meet the growing and evolving needs of the community.

Financials

GLUT1 DEFICIENCY FOUNDATION
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Operations

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

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GLUT1 DEFICIENCY FOUNDATION

Board of directors
as of 11/2/2021
SOURCE: Self-reported by organization
Board chair

Jason Meyers

State of Louisiana

Term: 2014 - 2020

Jason Meyers

April York

Rob Rapaport

Debbie Stoddard

Erin Meisner

Kelly Jones

April Breen

Maria Rebbecchi

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
  • 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 02/04/2021

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

Race & ethnicity

Gender identity

 

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 02/04/2021

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.
Policies and processes
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • 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.