Welcome to my 2022 fundraising page for the Glut 1 Deficiency Foundation. As many of you know, every year I help raise money for the Foundation’s annual fundraising campaign starting on Valentine’s Day and ending in two weeks on Rare Disease Day. I very much appreciate your generous gifts in past years, and hope you will consider helping me to support the Foundation this year as well.
I was 11 years old when I was first diagnosed with Glut 1 Deficiency Syndrome, even though I started showing symptoms just a couple of months after I was born, almost 21 years ago. Back then, my doctors did lots of tests, but could not tell my parents about my condition or how to treat me because they did not know what was wrong with me. Even 11 years later, I was diagnosed only because I was lucky enough to see a rare doctor who knew all about Glut 1 Deficiency.
There is currently no cure for my condition. However, the symptoms can be treated, and the doctors who study Glut 1 Deficiency say that the earlier treatment is started, the better the outcomes for older Glut 1 kids and adults. I feel lucky that my special diet has stopped my seizures and given me energy and stamina that I never had before. Still, I wonder what my life would be like today if my doctors had diagnosed my Glut 1 and started treatment when I was a baby.
Now, thanks to the hard work of the Glut 1 Deficiency Foundation, more doctors than ever know about Glut 1 Deficiency, and more children are getting diagnosed and treated at younger ages. Someday, research that the Foundation helps to fund will develop a cure. But until that day comes, you and I can help to give other kids like me their best chance in life—just by supporting the Foundation, and its mission to raise awareness about the importance of early diagnosis and treatment of Glut 1 Deficiency.
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