Living on the frontlines

I’m a bit late posting a health update, and an update on the transplant journey. I think I completely missed it last week. Please forgive me.  Last week was a very busy and a very productive week. We submitted a grant to Walmart asking for funds to help with conference. I don’t know if we have a chance, to be honest, but I felt like our grant application was a good one. Then again, I always feel that way – grin! I sometimes wonder with grants from large corporations like this one, if we stand less of a chance because we are not a huge national non-profit with lots of name recognition. We don’t fit the advertising campaign quite as well. But, we’ll see. If we did get this grant, it would be a HUGE boost to the conference! We also made progress on another grant we’re working on to help fund Meeting of the Minds – the medical meeting for HPS researchers. Lastly, we submitted our written testimony for the upcoming FDA hearing on pulmonary fibrosis. It was a week with a lot of deadlines,

We have added two new HPSers to the patient registry. This puts us at 89 to go on this year's Hundred People Search - HPS. 

A few weeks ago I was talking to a friend of mine. I was expressing my anxiety about all of the things ahead for the HPS Network, all of the doors opening up for us, but the need to have the funds to walk through those doors. While I can work on promoting funding the HPS Network generally, right now raising money for my medical needs is taking priority on a personal level. How do we help the HPS community understand what it takes to make these things happen? It’s a bigger challenge than you might think. Sometimes there is so much going on that it’s hard to take time to keep everyone in the loop, let alone help them really understand what it took to make things happen. We’d always rather be doing instead of telling everyone what we’ve done, yet if we don’t get better at explaining the process, how can we expect everyone to understand what it takes to keep the journey to the cure moving forward? Research doesn’t just happen by magic. It takes money to not only fund the actual research, b

Just a quick update! Things are plugging right along here. I’ve had a lot of stomach upset the last two weeks, especially last week. Yesterday and today it was much better, so hopefully we are over that little speed bump. Besides that, there isn’t much to report. Yeah! Yep, that’s my goal – to have the most boring medical life possible!!! Grin!