Kenadee’s page
by Lindsay Chandler
As many of you know, Kenadee was diagnosed with rare disease Glut1 Deficiency Syndrome in March of 2021. Since the age of 18 months old she has had hundreds of seizures a day and has been on numerous seizure meds and different drug combos that have all failed her. This amazing group of kids, adults and parents have been fighting for their diagnosis for many years, and deserve to have more research! We have come so far since the first diagnosis, but there are so many kids out there who are just like Kenadee. Without the proper research or education they will remain undiagnosed and on therapies that do no not work. Please help Kenadee reach her goals!
Kenadee’s page
by Lindsay Chandler
Supporting: Love Some1 with Glut1 2022 for Glut1 Deficiency Foundation
As many of you know, Kenadee was diagnosed with rare disease Glut1 Deficiency Syndrome in March of 2021. Since the age of 18 months old she has had hundreds of seizures a day and has been on numerous seizure meds and different drug combos that have all failed her. This amazing group of kids, adults and parents have been fighting for their diagnosis for many years, and deserve to have more research! We have come so far since the first diagnosis, but there are so many kids out there who are just like Kenadee. Without the proper research or education they will remain undiagnosed and on therapies that do no not work. Please help Kenadee reach her goals!
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
How would you like to support?
