Thank you for showing your love for DREW who is Some1 with Glut1 and for helping us bring help and hope to the Glut1 Deficiency community.
The last two weeks in February are a celebration of Drew's RARE DISEASE called Glucose Transporter Protein Deficiency. We are asking you to donate to Glut 1 because it is rare and our foundation needs money to......
1. Help bring AWARENESS to physicians so they can diagnosis patients early in their lives. It appears the earlier a patient begins treatment the better for their development. Drew was 17 but some are NOW diagnosed before their 1st birthday
2. Help fund RESEARCH!!!! Drew is the beneficiary of an ongoing study of using an oil that breaks down to Ketones for the body to use as an energy source since he is Deficient in the Glucose Proteins that are used to Transport the Glucose into the cells.
3. Help SUPPORT new Families to overcome their fear of the Unknown.. Most patients have to go on a specialized diet so their bodies will naturally use up ketones for energy since they cannot process sugar. This year we sent out overt 50 new welcoming packets!.. we have come a long way from rotary dial phones the internet has been a life changer for many families.
Many of you know our journey to Diagnosis.. This disease was not discovered until 1991. Drew was born in 1984 so for 17 years we were told " just accept and live with what you have.." All that changed when our neruologist heard a talk at a medical conference and thought lets try this.. The journey began ... The Testing began and we had HOPE ! Today Drew has such a HAPPY LIFE thanks to the Researchers, Parents , and YOU for helping our Glut 1 Family.
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.