Living on the frontlines

A few weeks ago Donna and I were communicating with a researcher interested in doing more work with Hermansky-Pudlak Syndrome. During the course of the conversation, he said something that just made my day. I felt like asking him if I could quote him, but I was too polite. Grin! I didn’t want to side track the conversation we were having about research. But, what he said was so important, I want to share it with HPSers, as well as all of our supporters. He said that one of the reasons he was so eager to work with HPS was that, for a rare disease, the HPS patient community is so well organized. He knows that when he is ready, he will be able to reach the patients he needs to reach quickly. Wow! Take that in a minute! I want to share it because he is right. We can reach a lot of our members very quickly because we are so connected as a community. We can do that because of all of you. All of those who have registered with the HPS Network, who check in with the HPS Website, follow us on Tw...

I promised all the people who have helped me raise money for my lung transplant process that I’d keep you updated on this blog, and I’ve done a lousy job of it! Please forgive me. The thing is I just don’t have the energy I once did. I haven’t had the energy of a “regular person” for some time, but these days it is worse. I plug away at my day and then suddenly, as if hitting a brick wall, I’m done. There is so much to do, that updating the blog isn’t always first on the list. So, here is where we are on the great move! Medically, I am all ready to go. Whew! That has gone very smoothly so I am greatly relieved that we didn’t have any issues there. Last week and this week I have been getting estimates from moving companies on moving my things. I’ve sent several loads of things to charity, and have some more things to send as we get closer. I’m not moving a large desk, for example, but wanted to use it until closer to time to go. If anyone has any advice on bids from nationwide movers, I...