CDG Awareness Day 2020

May 16th is the World Congenital Disorders of Glycosylation (CDG) Awareness Day! As this is coming up next week, I wanted to provide some information regarding how you can help support Blaise on this special day!

First of all WEAR GREEN on May 16th! That is the “official CDG color”. You know the boys and I will be rocking some green on May 16th. Don’t have anything green? What a GREAT excuse to spend some quaran-time doing some online shopping! Or wear your St. Patty’s day shirt. Blaise does have some Irish blood, after all!

As I am sure you know, raising awareness is crucial to the success in receiving resources to manage CDG, to continue developing potential treatments, and to (hopefully) find a cure for this disease. There has been a concerted effort to encourage the World Health Organization (WHO) to acknowledge May 16th as CDG Awareness Day. Right now, every single year, every state has to reach out to their governor and request this day to be officially acknowledged for CDG. In fact, I reached out to the NC Mayor in the Raleigh/Durham area and submitted information requesting a proclamation be issued this year acknowledging May 16th as CDG Awareness Day. But the reply I received was along the lines of “proclamations are not being issued due to staffing issues with COVID-19”. So wouldn’t it be nice if this day was already recognized so that a worldwide pandemic, or technological submission issues wouldn’t minimize the national awareness of this day?! I think so. If you think so too, PLEASE take a moment to sign this petition (http://chng.it/pwPt2gd9hd) so that we can make CDG Awareness Day recognized by the WHO and allow families of CDG to stop submitting these requests to their governor every. single. year. Please have your significant others, friends, children- anyone who can read and sign for themselves sign the petition! Now we are working toward 7,500 signatures!

Last October, the NIH approved a grant creating the Frontiers in CDG Consortium (FCDGC) (Here is more about the consortium if you are interested in learning more https://www.rarediseasesnetwork.org/fcdgc). The FCDGC has assisted in the creation of some great patient educational materials, which have been long overdue for the CDG community, Here is the link to these materials http://cdgcare.com/2020/05/05/patient-educational-materials-from-the-fcdgc/?fbclid=IwAR1JNkX_XTNhmJVg3lzQbyFqrZvoMT46v-bQdxgVyJblJQ4NKczH8YTEiBU These resources are a little longer (~20 pages), but very thorough, easy to read, and put together by staff at the Mayo Clinic!

Also, I was informed recently about this super cool infographic on CDG. I am all about easy to read and understand resources to teach people about CDG. I like that this infographic has a lot of simple but impactful facts without a lot of words! https://worldcdg.org/resources/infographic/what-is-cdg

As you know, one of my goals with this blog is to raise awareness of CDG. I want family and friends to know about this rare disease so they can better understand Blaise- and maybe even educate their friends and family. But most importantly, by raising awareness we support the ENTIRE CDG community (~1,500 strong.. and growing!). You might be thinking- Kara- that was a long and super boring blog post. So I will end with an adorable picture to make it worth your time: