Miguel was diagnosed with GLUT1 @ the age of 4 ½.
Miguel's diagnoses went missed due to the lack of awareness and education in Wisconsin's medical system. After countless appointments with different neurologists, ophthalmologists, other specialists, EEGs, MRIs, weird eye violating tests, blood work, urine analysis and more. No doctor could give us any answers.
Once Miguel received his diagnosis he was immediately started on the only treatment for GLUT1, the Medical Ketogenetic Diet. We started noticing changes, for the better, in Miguel 2 weeks after starting the keto diet and were so happy when the 6 month marker rolled around with no seizure. We recently were able to celebrate Miguel being 3 years seizure free in November of 2021. Although we have reached such an amazing milestone there are still daily battles that Miguel faces.
That is why this campaign is extremely important to our family because it helps raise awareness, education and research on GLUT1.
Help us by spreading the word and raising funds for the GLUT1 foundation. Your donations help fund research about GLUT1 to better serve individuals like Miguel.
We appreciate all of you!
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