Aria’s Life Story through misdiagnosis to Glut1:
Hi everyone….. So I decided it’s time to write up Aria’s history when it comes to Epilepsy and Glut1 deficiency syndrome from baby until now so we can help raise more awareness. I know this is long but it’s worth the read ????.
I had to link a Facebook link because I couldn’t fit all the text here! This was written a while back however, Aria continues to grow and thrive every day thanks to Medical keto and her Glut1 diagnosis.
Another link to her story on YouTube:
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