Katie Meyers




Hard to believe that it has been 9 years since Katie?s diagnosis of Glut1.  In this time, we have gotten good at keeping her on a ketogenic diet while still going and doing anything we want. Even though the diet does her a lot of good, we still see some issues that require us to monitor.  In fact, on this Valentine?s Day, the start of our fundraising, she is in the hospital for a 23 hour EEG.  

You probably also know that we are very involved in the Glut1 Deficiency Foundation.  In fact, Jason is the President.  Even though our Glut1 world is small, we have accomplished great things since the Foundation?s inception just over 7 years ago    including raising awareness by exhibiting at professional conferences, hosting bi-annual conferences, and by giving over $500,000 to research.  Thanks for all of the support.  

The Glut1 Deficiency Foundation brings help and hope to the Glut1 Deficiency community through its mission of increased awareness, improved education, advocacy for patients and families, and support and funding for research.

Glut1 Deficiency is a rare genetic condition where glucose doesn't reach and fuel the brain properly, resulting in a wide spectrum of neurological issues affecting brain growth, learning, movement, speech, and often causing seizures. There are fewer than 1,000 people diagnosed in the world, but experts believe there are many, many more patients still waiting to be found. Because Glut1 Deficiency is so rare, many in the medical profession don't have the knowledge they need to diagnose and properly treat it.  

There is a very effective treatment for most patients - a ketogenic diet, and the earlier patients are diagnosed and start treatment the better the outcome. As fortunate as we are to have the diet, it is not a cure, not a complete treatment, and it is not easy. We need more research for better understanding, better treatment options, and ultimately a complete cure.    

The Glut1 Deficiency Foundation is working hard to bring help and hope to the Glut1 Deficiency community.

The Love Some1 with Glut1 annual campaign is our primary awareness and fundraising event. It runs from Valentine's Day (February 14th) through Rare Disease Day (February 28th), and it is an opportunity to spread awareness and raise much needed funds to help better serve the needs of the community. All donations help fund our mission programs for increased awareness, improved education, advocacy for patients and families, and support and funding for research. 

some highlights our supporters made possible in 2017

Please help us continue our mission.  

We can do so much more together than any of us can do alone.

please watch our special thank you video

Please visit our website to learn more about Glut1 Deficiency and the work of the G1D Foundation.

How would you like to support?