Ok people I'm behind in launching my annual GLUT1 fundraiser. Help me out!
Yes I ask for money every year.
Is it annoying... yes it is.
It's also annoying that 10 years ago researchers announced they thought they'd have a cure by this year. If they had more money to hire more researchers may be they would have a cure by now.
Here are a few reasons I beg for money every year.
1) Our Vivian. We started out at 14 weeks with a healthy baby and then spent 24 months looking for a diagnosis. Little did I know that 2 years was a very short time to find an answer compared to nearly all other patients over 10 years ago when Vivi got diagnosed and STILL WOULD BE QUICK TODAY.
In 10 YEARS there still are so many kids out there waiting for a diagnosis it kind of makes my blood boil. Our foundation brings a booth to dozens of events a year to educate doctors and I was astounded how many had never heard of it.
This was especially true of older doctors which means it's being taught in med school so that's one positive.
GLUT1 is one of the few TREATABLE genetic diseases found in kids but EARLY INTERVENTION IS KEY to future outcome.
2) GLUT1 is an "orphan" disease. Grants are hard to come by and not all GLUT1 families fundraise.
We DIRECTLY fund RESEARCH. We've given over $500,000 to researchers over the last 8 years.
3) the information being learned via that research has applications to other diseases including ALZHEIMER'S.
4) the money we raised also goes to help offset cost for our family conferences. These conferences offer not only high-quality medical education for doctors and patient families they offer the invaluable opportunity for families to fellowship. If it weren't for these conferences many of our children would go their whole lives without meeting another person with glut1.
So please help need help Vivian and other people with glut1 have a brighter future by donating today.
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.