#rareadvocate

[akabrat]

Looking back through photos I can’t believe I forgot to post this photo. I have to say #advocacyday2019 was so much fun with the #idf2019nc it was so great to be a part of such an important time for all of us with #raredisease to speak up and be heard. It was great that @sencortezmasto took the time to listen about HR2507 the new born screen saves lives & continuation of prohibiting an exclusion for preexisting conditions. I look forward in speaking to our legislatures in upcoming events. Being an advocate for your own health is just as important as speaking up for others with similar #raredisease @rare_advocates we are the voice for everyone. Let’s come together and be a change #rareadvocate #advocate #bethechange #zebrastrong #cvid #cvidadvocate #cvidawareness #mctd #rarediseaseday2019 #autoimmune https://www.instagram.com/p/B0Wnozfgouy/?igshid=1cd3762hec89v

[backyardbeehive]

Feeling a bit dain bramaged. 🧠 Spent the last 5 days trying to figure out why a client’s IP is black listed and her emails blocked by certain recipients. Still don’t know. But I think I fixed it? 🤔 The videoclip is from “This is Life with #MdDS” an #awareness piece for the nonprofit I work with @mddsfoundation. June is its Awareness Month. If you know someone who went on a cruise and could not get their landlegs back after weeks or months, they may have Mal de Debarquement Syndrome, which is a neurological condition. I got it from a long flight. You can get it from sleeping on a waterbed. 😱 There is no cure. .. #womenwhocode #mddsjam #mddswarrior #maldedebarquement #maldedebarquementsyndrome #rareadvocate

[sicklecellmn]

If every one with a rare disease lived in the same country, it would be the 3rd mist populous country in the entire world! #SickleCellAware #SickleCellMatters #rareadvocate (at Lijst van bekende mensen uit Washington D.C.)