The Glut 1 Deficiency Foundation has become a lifeline for our family. After years of seizures, delayed learning, and various other symptoms, Paisley was finally diagnosed with Glut 1 in 2020. This diagnosis had rocked our world, but having the support of the Glut 1 Foundation makes the road we travel a little less scary. We love our Glut 1 Girl and our Glut 1 family. We are thankful for any support you may give.
Each year, from Valentine's Day to Rare Disease Day, the Glut1 Deficiency Foundation hosts the Love Some1 with Glut1 campaign. It is an important opportunity to increase awareness and educate others about this rare disease while raising essential funds to help better serve the needs of our patient community through our mission programs.
In addition to our regular activities, we are working on some big and important goals for 2022
- host our 9th family conference to bring families together to meet, share, and learn
- host our 2nd scientific convening for researchers and clinicians to exchange knowledge and ideas
- launch our Research Roundtable program to build a collaborative research network
- begin implementing and funding our newly developed patient-led Research Compass
- launch a natural history study to better understand life-long patient experiences
- expand our educational exhibits to reach and teach new audiences of medical professionals
- create a new website to serve as a hub for information, support, connection, and hope
Shine Like Some1 with Glut1
learn more about Glut1 Deficiency
from our brochure here