Hello, everyone. Thank you very much for visiting my fundraising page during this year?s Love Some 1 with Glut 1 campaign for the Glut 1 Deficiency Foundation. The campaign always happens during basketball season, and this year, I got to star in a basketball movie produced by my sister, Zoe. I don?t actually have any lines in the movie, but I hope you enjoy it anyway! Here is the link:
As you can see in the movie, I still have plenty to do before I can become a professional player, but I am working hard. In fact, I have been practicing shooting baskets since summer and have already scored several times in the first three games of my Unified Basketball season.
This summer, I went with my dad and sister to the Glut 1 Deficiency Foundation conference in Nashville. I sat through lots of talks by doctors and researchers who are trying to find new ways of treating Glut 1 Deficiency Syndrome. I think they are working even harder than I am.
The good news is that you can help them and at the same time help me and kids like me. The Glut 1 Deficiency Foundation uses your donations to fund research into new treatments and even potential cures for Glut 1. The Foundation also works to educate doctors about Glut 1, so that kids can get diagnosed and start treatment earlier. Every donation helps doctors and researchers achieve their goals, and their goals help me and other Glut 1 kids to achieve our dreams. We all work together and everyone wins, just like in my Unified Basketball program.
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.