Organizations Filed Purposes:
The Glut1 Deficiency Foundation is a nonprofit patient advocacy organization dedicated to improving lives in the Glut1 Deficiency community through its mission of increased awareness, improved education, advocacy for patients and families, and support and funding for research.
Support and Funding for Research: The Glut1 Deficiency Foundation has a research grant program where funds are awarded for scientific research related to the understanding, treatment, and cure of Glut1 Deficiency. Funds are set aside from donations and are distributed in grant award cycles when amounts reach levels that make the grant awards possible and impactful. In 2020, the Glut1 Deficiency Foundation funded four grants at three institutions, totaling $167,200. Additional funds were invested in efforts to host our first ever scientific meeting in 2021 and in steps to develop a collaborative research network. We also funded open access fees for two Glut1 Deficiency research publications in peer-reviewed scientific journals.
Advocacy Programs: The Glut1 Deficiency Foundation is engaged in collaborating with other national and international rare disease patient advocacy organizations to provide a representative voice for Glut1 Deficiency patients and families in public discussion and policy issues. The G1DF advocates for families and patients across school, healthcare, and disability programs to make sure the challenges of the condition are understood and that patient rights are being protected. Advocacy efforts for 2020 include membership in the National Organization for Rare Disorders (NORD), Global Genes Foundation Alliance, the Rare Epilepsy Network, and COMBINEDBrain. WE participated in numerous online conferences and trainings, and we were able to facilitate the creation of a new ICD-10 code specific for our disease (taking effect on October 1, 2020). We participated in Rare Disease Week on Capitol Hill, meeting with several members of Congress to talk about issues and raise awareness about the struggles of rare disease patients.
Education and Awareness Programs: The Glut1 Deficiency Foundation has several outreach programs to help raise awareness and improve education. We are planning for our next biennial family conference in 2021 (virtual). We typically host 6 to 8 educational exhibits at major medical meetings, but with COVID-19 travel limitations, many of those opportunities were cancelled for 2020. We did participate in several online conferences after COVID-19 emerged and began impacting in-person events. We also have online print resources, and we revamped and updated our educational brochure in 2020 with the help of newly published consensus guidelines on diagnosis and clinical care. We provide awareness merchandise on our website, and we send welcome packets of information to newly diagnosed families who sign up for our Family Network. We also premiered a new educational video about Glut1 Deficiency in partnership with Osmosis.org.
Executives Listed on Filing
Total Salary includes financial earnings, benefits, and all related organization earnings listed on tax filing
| Name | Title | Hours Per Week | Total Salary |
|---|
| Glenna Steele | Executive Director | 40 | $41,785 |
| Sandra Ojeda | Science Director | 5 | $0 |
| April Breen | Fundraising Director | 3 | $0 |
| Kelly Jones | Communications Director | 3 | $0 |
| Maria Rebbecchi | Education Director | 3 | $0 |
| Erin Meisner | Advocacy Director | 3 | $0 |
| Debbie Stoddard | Treasurer | 3 | $0 |
| Rob Rapaport | Secretary | 5 | $0 |
| April York | Vice President | 2 | $0 |
| Jason Meyers | President | 5 | $0 |
Data for this page was sourced from XML published by IRS (
public 990 form dataset) from:
https://s3.amazonaws.com/irs-form-990/202140999349300134_public.xml