Next Generation Advocacy

This spring semester, the GLUT1 Deficiency Foundation had the privilege of participating in the inaugural Rare Project Network at the University of Notre Dame. We were especially fortunate to be paired again with Lindsey Hermann, who previously interned with us last summer.

The RARE Project Network at Notre Dame is a student-led program within the Patient Advocacy Initiative that connects students to rare disease communities to tackle real world challenges through projects that support rare disease patients, families, and patient advocacy organization. It is a key part of the university’s efforts to integrate research, advocacy, and education.

This time, Lindsey led a team of eight students, including freshmen and sophomores, who worked on several projects to support our community in meaningful ways. Their efforts included updating and enhancing a database of case reports by compiling information on variants in the SLC2A1 gene and associated symptoms (genotype-phenotype correlations); identifying potential links between GLUT1 Deficiency and other diseases related to the GLUT1 protein; and designing infographics to help families access resources and raise awareness about GLUT1 Deficiency.

The team worked incredibly hard and successfully completed all of the proposed projects. At the conclusion of the program, they presented their work at the Rare Project Network Final Showcase at the University of Notre Dame, sharing both a research poster and a lightning talk highlighting their contributions to our community.

We are incredibly proud to share that they were awarded both the RARE Impact Grand Prize and the People’s Choice Award for their lightning talk. The Grand Prize recognizes excellence in feasibility, sustainability, innovation, and overall impact of the team’s deliverables.

Congratulations to this outstanding group of students, and thank you for your dedication, creativity, and the valuable resources you developed for our community. Most importantly, thank you for your commitment to raising awareness and supporting individuals and families affected by GLUT1 Deficiency.

We are forever grateful and can’t wait to see the impact you continue to make!