Living on the frontlines

Many of you that follow these things closely will have already seen this news yesterday - but since it means a little something different for us, I wanted to share. Intermune (the company that makes the drug pirfenidone, brand name Esbriet) announced the results of their ASCEND trial yesterday and they were good! This means that the company will be moving forward to try to get FDA approval for the drug to treat IPF (idiopathic pulmonary fibrosis). So, for those who haven't followed this saga or for the new folks, here's a little background on all this and the tie-in for HPS. Back in the late 90s the NIH conducted a small phase II trial of this drug to treat the PF of HPS. The results were promising. It is NOT a cure, but did slow down the progression of the lung disease. We were ready to do our phase III trial, but the drug was sold to another company and our trials were put on hold for several years (very frustrating). Finally, in 2006 we were able to start our phase III trial

Photo: Ryan and Nevaeh on Adoption Day This is a new subject for my blog! I’ve wanted to blog about it for a long time, but haven’t been able to because of the rules of the foster care system. Actually, who knows how much I could have, or could not have, said – thing is when in doubt I error on the side of caution. In November my niece, Nevaeh’s, adoption was finally finalized. Woohoo! The process can take so long and be held up for months for something as simple as a signature. I got to be in Washington for National Adoption Day and the little ceremony with the judge at the court. It was all rather anticlimactic as in my heart Nevaeh has been my niece since the moment she arrived at Ryan and Sara’s home. She had me wrapped around her cute little finger from the word go! The ceremony didn’t seem like a huge deal to Nevaeh either. She was a bit irritated that we made her leave a tasty muffin at the reception to go into the courtroom. My nephew, (adoption not yet final so I won’t sa

Our friend Edwin was listed today for his new lungs! Edwin is someone I admire very much as he's worked so hard just to get listed. He relocated from Puerto Rico about a year ago, leaving behind friends and family. That's not easy to do when you are so ill and you know that if you don't get the lungs, you'll die. It's also been a huge financial strain.  Edwin moved to a place he didn't know in Minnesota. He as undergone a year of tests, surgeries to correct some issues that kept him from being a candidate, more tests, and more tests, and then more surgery. It hasn't been an easy road, but he's hung in there and been a tough cookie.  Now, he has his chance at a new birthday.  Here is his lung transplant fundraising page:  https://hpsnetwork.donortools.com/my/funds/51029-Ayuda-a-Edwin-a-obtener-sus-pulmones-Help-Edwin-get

This morning we added a new HPSer to the patient registry. We are now at 34 to go on this year's Hundred People Search. 

I haven’t posted a health update (or much of anything else) in some time. I’ve had some huge life events and I really, really want to record them. These days, however, I am as busy with HPS work as I ever was working as a journalist. Sadly, I’ve also been having some health issues. This means there are only so many hours in a day that I am really productive, and I need to spend them working on some HPS work. It’s important stuff, or I wouldn’t put aside things I know I need for my own well being. (And, it isn’t something that will go on forever.) Sometimes you just have to bite the bullet and hunker down! That being said, I had a not-so-wonderful doctor appointment on Friday. I mentioned it on facebook, but didn’t go into details. Facebook is not a blog after all. And, this way I figured the people that really want to know what is going on will click through and read this. I’ve always been committed to sharing my HPS journey, but some forums seem better than others for the purpose. I l

Today we added a new member to the patient registry. This puts us at 35 to go on this year's Hundred People Search.