After years of medications, testing, therapies, doctor's Ethan was diagnosed with Glut1 Deficiency at 8 years old. While it was great to have an answer it was heartbreaking to find out there wasn't a cure. Daily seizures are Ethan's main concern with Glut 1, with his latest struggle of turning 16 and not being able to drive like his peers. However, we have a great support system with the Glut 1 Deficiency Foundation being at the top.
The Glut 1 Deficiency Foundation is the single source of support provided to Glut 1 families. It is run mostly by volunteers who give countless hours of their time to make sure that kids (and adults) and their families like ours have a place to go. We share our stories, our successes, our failures. We give each other the social and emotional support that is needed to get through the bad days and the good days. We meet at conventions to hear the latest updates from the medical field and raise awareness with doctors on Glut 1. The Foundation's staff shares regular informational packets to newly diagnosed families and provide online support along with paper brochures to anyone that wants or needs them. Most of all, they provide financial support to Dr's who are willing to research for a Glut 1 cure, which is what every Glut 1 person wants.
We are a rare group, living with a rare disease with only approximately 1000 people being diagnosed in the world! The support me and my family receives from the Glut 1 Deficiency Foundation is priceless.
Please help Ethan reach his goal of raising $10,000 for the G1D foundation. You support is very much appreciated. Love Ethan and family.
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.