Happy Rare Disease Day – Love Some1 with Glut1!

The annual Love Some1 with Glut1 is underway! From Valentine’s Day to Rare Disease Day (February 29th), the campaign raises money to support the important and impactful work of the Glut1 Deficiency Foundation and its mission of educating others, increasing awareness of and advocacy for Glut1 Deficiency Syndrome. click here to donate

I love someone who is rare!

And I love the fact that Glut1 Deficiency has an effective form of treatment despite the fact that it is so rare! This is why raising awareness and getting kids diagnosed early is so crucial. Three neurologists with years of experience saw Drake and none even thought of Glut1 Deficiency as a possibility. Drake wasted three crucial brain-growing years with the wrong diagnosis, to the point of it causing microcephaly, and still no one even thought of Glut1 Deficiency. That needs to change. Donating to G1 Foundation and to the cause of other rare diseases will help everyone get diagnosed faster and possibly lead to better treatments and a cure.

I made this video last year for the annual G1 Foundation fundraiser — Love Some1 with Glut1, which runs from Valentines Day, February 14th to Rare Disease Day, February 28th to help tell Drake’s story. The only funding Glut1 receives is from parents, friends, and neighbors who help raise money for much-needed research into brain metabolism and how Glut1 patients’ brains work.

And please donate if you can: http://www.g1dfoundation.org/

Author: Debra Lane

Debra & Ken Lane maintain this blog to chronicle their son's journey of living with the rare neurometabolic disorder, Glucose Transporter Type 1 Deficiency Syndrome (Glut1 DS for short). And hope to raise awareness and understanding of the non-epileptic form of Glut1 DS. Drake’s Glut1 journey started at the age of 3 with episodes of Ataxia and Dyskinesia. Now at the age of 8 he is 2 years symptom-free — thanks to the right diagnosis and the ketogenic diet.

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