Living on the frontlines

The move saga continues. Finding an apartment in Arlington has proven to be a huge job. It would be easier if I were moving like a normal person. The options would be wider. Instead, I’m trying to find an apartment in a very specific price range to qualify for a housing grant. I need something Ryan can get to if he needs to and it can’t have too many stairs (although some are okay.) And then there’s the laundry. I’m trying to get something with a laundry in the building somewhere. I think finding one with a unit in the apartment just isn’t going to happen in my price range. I think I am going to have to go ahead and go to Arlington and put all my things in storage. This has been pretty upsetting for several reasons. First, it just adds more cost to the move. Second, it means Finley will have to go to my mom. If he doesn’t get shipped soon it will be too hot for it to be safe to ship him. I have no doubt my mom will do a great job of caring for him, but I hate so much to be parted from

Thank you so much for all of the folks who have helped fundraise for me to make this move possible. With your help, and my family chipping in as well, this is going to be possible. I don’t know what I would have done without all of you. I am now medically cleared to move. We are through the HPS Conference. I have a moving company lined up (unless I decide to go with a plan B) and about half of my things are packed now. I’m scheduling the Salvation Army to come and get the last of the furniture I don’t plan to move including: a couch in very, very, very bad shape, two small bookshelves, a drafting table, a large (and very heavy) desk and probably two bags of other smaller things. The hold up right now is just finding the apartment. We have several leads so I’m really praying we can just line something up and get it done. If we don’t find something very soon, I may go ahead and leave for Virginia and have my mom finish the pack-out on this end. Boy is moving expensive! There’s the increa

We are kicking off a new year for the Hundred People Search (HPS) and we've got a great start! We have added three new HPSers to the HPS patient registry. We just have 97 to go! Grin!  The Hundred People Search (HPS) is a yearly campaign in the Hermansky-Pudlak Syndrome community to encourage those with HPS, and our supporters, to help those with HPS find a diagnosis and get registered.  This is so important for several reasons!  First, one of the most dangerous things about having HPS is not knowing it. A recent study (that I have on my list of things to blog about) showed that, on average basically, it takes seven years to get an HPS diagnosis. Too many times over the years we've seen someone, unaware they have HPS, end up in a crisis because they didn't know they had a bleeding disorder. Not knowing doesn't give you the chance to learn about, and do, all the things that can keep you healthier longer and improve your quality of life. It doesn't give you the