Where have all the staffers gone? It seems like that should be the line of a song. Grin! I just wanted to post a little about what is going on behind the scenes at the Network. I know those of you who actively follow the HPS Network’s social media etc. or who have needed things from us lately, might have noticed we’ve been less active online and maybe not as quick to respond to non-emergency issues. There are a lot of times things are quite busy in the HPS Network offices, but we can’t always elaborate about everything happening. It isn’t that it’s a huge secret exactly. It’s more the boring nuts and bolts of keeping the ship afloat and the trains running (hopefully at least mostly on time.) There are times we are working on things that just can’t be announced yet for lots of reasons. This is just like any other business. Sometimes things fall through, or developments can’t be announced until all the players are ready. Sometimes we are just so busy working to move the cure forward, we ...
Stories from the battle to cure Hermansky-Pudlak Syndrome, and other observations about every day life