Last summer, our daughter Alora was diagnosed with Glut1 Deficiency Syndrome, after more than a year of searching for answers (and 3 years from her very first symptom). Compared to many, we got a diagnosis early and quickly... and yet, the 3.5 years without the diagnosis (or treatment with a ketogenic diet) means that Alora has been left with developmental setbacks that could have possibly been avoided had her initial symptoms at 3 months of age been followed up on when I raised concern with her pediatrician. I am fundraising because the Glut1 Foundation works hard to spread awareness and information, so that more people with this condition can get diagnosed quicker. They also help fund research to explore alternative treatment options, and to better understand the full implications of this disorder! The more money they raise, the more doctors will learn about identifying, diagnosing, and managing this disorder; since we are military and move frequently, I find myself having to educate the professionals! The Foundation provides wonderful resources to help me do this, as well as provides information & support to patients and families. Please consider contributing to my fundraiser, which concludes on rare disease day, 2/28.
The Love Some1 with Glut1 annual campaign is the primary awareness and fundraising event for the Glut1 Deficiency Foundation. It runs from February 14-28, Valentine's Day through Rare Disease Day, and it is an important opportunity to spread awareness and raise much-needed funds to help better serve the needs of the Glut1 community.
Please visit our website to learn more about Glut1 Deficiency and the work of the G1D Foundation.