Please help us celebrate Rare Disease Day February 28 by showing your support for Joe and donating to the Glut1 Deficiency Foundation!
Like most of us Joe’s world has gotten smaller with the Pandemic. To Joe’s excitement after over a year and a half his Dayhab program finally opened its doors. He was finally able to get back to his routine and see his friends only to be shut down once again with continued Covid cases. Fortunately Joe sees the silver lining in everything and he doesn’t let anything get him down. He faces his challenges with strength. He is always at his happiest when he is surrounded by family and friends. When Joe is with all 4 of his nephews he can’t stop laughing at their silliness! When he is with his brothers he is happy to be one of the guys. Big Joe’s big heart overflows with love for his “Little Big Sisters” and watching Nani (grandma) cook is one of his favorite things to do! But his best friends in the world, Mom and Dad mean everything to him. Their love and guidance has taught Joe that there is no obstacle that he can’t overcome.
The Glut1 Deficiency Foundation is an amazing parent run non profit organization its goal is to increase awareness, provide support and education and to ultimately find a cure.
We thank you for your continued support it means the world to us!
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