World CDG Awareness Day

There is an ongoing movement targeted to officially declare May 16 as World CDG Awareness Day. CDG refers to Congenital Disorders of Glycosylation, which is the larger subset of rare diseases that includes Teddy's specific diagnosis. As a whole, CDGs do not have cures or even well-developed treatment options because there is relatively little known about each of these rare diseases.

This is exactly why there's a worldwide movement to designate today as the World CDG Awareness Day. Awareness of the existence of CDGs is the first step in a long journey to provide answers, hope and better lives to the families affected by these disorders. 

The thought crossed my mind to petition Wisconsin to issue a statewide declaration, but intentions didn't become reality this year. I'll put that on my list for next year.

In the meantime, I updated the blog's color scheme to green, which is the designated color for CDGs. And I'm respectfully asking everyone to consider signing this petition that is being circulated to submit to the World Health Organization: https://www.change.org/p/congenital-disorders-of-glycosylation-cdg-world-awareness-day-on-may-16th