Glut1 Deficiency Foundation
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About the Foundation


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
  • support and funding for research

Annual Report

Read more about what our donors have made possible in the past year and the ambitious goals for the next one.
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Recent and ongoing projects
  • Chan Zuckerberg Initiative Rare As One Network - establishing a collaborative research network
  • Scientific and Family Conferences on Glut1 Deficiency – next meeting July 2022
  • $1 million in grant awards for helping fund current, ongoing, and future research and research-related projects:
    • C7 (triheptanoin) study at UT Southwestern
    • natural history study and special research projects at Columbia University
    • Senior Research Scientist position at UT Southwestern
    • international patient registry
    • ketone supplement research at the Universities of South Florida and Salerno (Italy)
    • gene therapy related studies at Columbia University
    • blood brain barrier and stem cell studies at Texas Tech
    • therapeutic compound screenings at UT Southwestern
    • phenotype-genotype studies at Columbia University
    • alternative treatment studies at UT Southwestern
  • Website and media resources and support
  • Osmosis educational video
  • Brochure project for use in education, awareness, and advocacy
  • Find Some1 with Glut1 diagnostic campaign
  • Facilitating hospital Grand Rounds teaching opportunities
  • Facilitating creation of expert consensus guidelines for Glut1 Deficiency
  • Professional conference exhibits and focus group meeting participation
  • ICD-10-CM diagnosis code proposal and approval
  • Patient advocacy training and efforts
  • Giving patients and families a voice in the rare disease world through membership and activities with NORD (National Organization for Rare Disorders) and Global Genes
  • COMBINEDBrain Consortium for Outcome Measures and Biomarkers in Neurodevelopmental Disorders
  • Rare Epilepsy Network active membership and activities
  • Congressional meetings
Conferences
Educational Events

Foundation History
The Glut1 Deficiency Foundation was formed originally in 2009 – born of a desire for Glut1 families to get together to meet, share, and learn from one another. Glut1 Deficiency is such a rare diagnosis that many families, and especially our Glut1 children, have never had the experience of meeting others who share this journey.

The Yahoo Health Group for Glut1 DS was our original meeting place, and as our connections with and dependence upon each other deepened and strengthened, we started talking about how good and helpful it would be if we could meet in person. A group of Glut1 Deficiency families in Australia had a gathering a few years earlier, so this was the inspiration for us to do the same. A German Glut1 parent group (www.glut1.de) also has regular family get-togethers, and we very much wanted to have a similar experience.

Jen Lazar, mom to Sam, had the courage to take on the task of organizing our first family meeting in Chicago, which quickly grew into a full-fledged conference as world-renowned Glut1 Deficiency researchers, doctors, and dietitians were eager to join us. The knowledge, experiences, and emotions shared there certainly impressed upon us the need to continue having conferences to be able to have time with other families and to continue to learn about the work being done by the specialists on behalf of our children. As relationships developed with these Glut1 experts, we soon learned that there were very few sets of eyes and very few dollars focused on researching Glut1 Deficiency – and we wanted to help change that.

As our second conference rolled around in 2010, hosted by the Steele family (Macie), we were well on our way to building a formal organization (originally naming ourselves glut1ds.org) and trying to make a difference for our children. The Meyers family (Katie) spearheaded a $25,000 fundraising effort that was presented at the conference for a clinical trial at UT Southwestern for the use of C7 oil (triheptanoin) as an alternative treatment for Glut1 Deficiency. The Louisville conference also gave us an opportunity to meet with experts and other interested families to begin to plan the process for becoming a formal non-profit group. A leadership board began to emerge in early 2011, and the groundwork began to be laid for what became called the Glut1 Deficiency Foundation. We received our 501 (c)(3) designation from the IRS in July of 2011.

Our third conference was held in New Orleans in 2011 and hosted by the Meyers family. Board members had the opportunity there to meet with our esteemed Glut1 Deficiency experts and work on setting goals and developing plans for future projects.  We have continued to grow our service programs and our impact, have expanded our Board of Directors, and have added both a Medical Advisory Board and Scientific Advisory Board to help guide our endeavors.

With so little government funding available for rare diseases, we know that the future of research, advancements, diagnosis, and improvements in treatments and quality of life for Glut1 Deficiency patients rests largely in the hands of families. We know that we can do so much more together than any of us can do alone, and there are many projects, both large and small, where we can help move things forward. We are already hard at work trying to help all people, present and future, with Glut1 Deficiency, and we hope to one day be able to help bring about the ultimate treatment – a cure.

Tax Filings and Information
Glut1 Deficiency Foundation Tax Exempt Designation Letter
​
2020 IRS filing                                       2020 Financial Audit                                             2020 Annual Report ​
​2019 IRS filing                                         2019 Reviewed Financial Statements                2019 Annual Report
2018 IRS filing
2017 IRS filing
2016 IRS filing
2015 IRS filing
2014 IRS filing

Policies

terms of use and privacy policy
conflict of interest policy
commercial engagement policy

Inclusion Statement

​The Glut1 Deficiency Foundation is a nonprofit organization that honors the fundamental value, dignity, and diverse life experiences of all individuals. We recognize the right of every person to be mutually respected and accepted regardless of any differences. We strive to be inclusive, fair, and kind as we work to best serve every member of our community.

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Glut1 Deficiency Foundation
PO Box 737 
Owingsville, KY 40360    
​info@G1DFoundation.org
​
Contact Us

​​Resources and information on this website are not intended as medical care or advice.
​​Please consult with your healthcare provider.
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Copyright © 2021 Glut1 Deficiency Foundation
  • Home
  • About Glut1 Deficiency
    • What is Glut1 Deficiency?
    • Key Terms in Glut1 Deficiency
    • About the Ketogenic Diet
    • Newly Diagnosed
    • Research >
      • Research Compass
      • Research News
    • Patient Registry
    • Resources >
      • Resource List
      • Videos
      • The Patient Voice
      • Cognition and Learning
      • Family Recommended Specialists
      • COVID-19
      • Patient Stories >
        • Family Stories >
          • Share Your Story
      • Materiales en Español
      • Brochures
  • About G1DF
    • About the Foundation
    • Leadership Team
    • Medical Advisory Board
    • Scientific Advisory Board
    • Educational Events and Exhibits
    • Ways to Help
  • News
    • Glimpses | The G1DF Blog
    • Foundation Newsletters >
      • Summer 2022
      • Spring 2022
      • Winter 2022
      • Fall 2021
      • Summer 2021
      • Spring 2021
      • Winter 2021
      • Fall 2020
      • Summer 2020
      • Spring 2020
      • Winter 2020
      • Fall 2019
      • Summer 2019
      • Spring 2019
      • Winter 2019
      • Fall 2018
      • Summer 2018
      • Spring 2018
      • Winter 2018
      • Fall 2017
      • Summer 2017
      • Spring 2017
      • Winter 2017
  • Conferences and Events
    • 2022 Scientific and Family Conference
    • Conferences and Events
    • Glut1 Gatherings on Zoom
  • Get Involved
    • Family and Professional Networks
    • Volunteer Network
    • UTSW Surveys
    • Sign Up for Our Mailing List
    • Ways to Give
    • Shop to Support
    • Donate
    • Love Some1 with Glut1 >
      • 2022 Love Some1 with Glut1
    • Million Dollar Bike Ride
    • Fundraising >
      • Fundraising Help
      • Host a Fundraiser
  • Donate