Today is Rare Disease Day! My family is one who knows what this means first hand. My son is one of the rare individuals diagnosed with Glucose Transporter Type 1 Deficiency Syndrome (Glut1 DS). My family and I couldn't be prouder of all Ben has accomplished since he was diagnosed at 8 weeks old. In fact, as I type this, he is probably taking his mid-term exams at college. Who would have thought this was possible. Thanks to the tireless efforts of the medical teams who are studying and treating this rare condition, and the amazing support of the Glut1 Foundation, more is being learned about it. Doctors are being educated and kids are being diagnosed earlier, which contributes to better quality of life for the kids and their families alike. When Ben was diagnosed, he was the 20th documented case in the world! It's hard to even imagine those days. We all have come such a long way. But like most rare diseases, they get little attention and support. So I am asking for yours today. In honor of my son, Ben, and all the Glut1 families, and in recognition of Rare Disease Day, please consider making a contribution. If all my friends on Facebook contributed $2, I will have exceeded my goal exponentially. Please give what you can and if you can't, please send your good vibes... choose elected officials who also support the National Institutes of Health and legislation that helps families like mine and others with rare - or even not-so-rare - diseases. Thank you!
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.