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The blog is back, I hope

  What started as a way to share news about HPS and what it is like to live with Hermansky-Pudlak Syndrome has fallen apart badly! There are a lot of reasons for this. Some are related to health. Some are related to time. And some are related to mental health. Finally, the last obstacle was technical. I lost access to my blog. Every time I started to work on regaining access, something interrupted the process and I’d have to start all over again. Before you say it, I know. A blog is so old school. Haven’t you heard of a vlog Heather? Or maybe TikTok? I know my limits. I have a great face for radio. I’m not particularly eager to film myself. When I do, I feel I need to spend extra time putting on makeup or fixing my hair. Yet, often when I have the time to do something like this, it is early in the morning or late at night. I don’t want to “get ready.” I’m having a hard enough time squeezing this in without staging myself. Grin. I’m trying to start with small goals. Right now, I’m h
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Hundred People Search Update

 It's been a rough summer and fall for me, so I am very behind on posting updates. More on that later. We have added eight new HPSers to the registry in these past few months, which puts us at 80 to go on this year's Hundred People Search. We are behind where we usually are, but given the sort of year it has been, I think that is to be expected. 
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Hundred People Search Update

We have added two new HPSers to the registry. This puts us at 88 to go on the Hundred People Search (HPS). Both of our newest members are from outside the United States. It is so important to find our fellow HPSers overseas, as well as in the U.S. We don't want to leave anyone behind. And, who is to say the cure will be found here? There are brilliant scientists all over the world. The HPS Network currently has a program to reach out to scientists from around the world interested in HPS research. Often they want to know if we have HPSers from their given countries in our database. We are a rare disease. We can't afford to have our efforts separated by borders. 
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Hundred People Search Update!

It has been a while since I've posted an update. Sometimes it takes time for people to work their way through the testing phase etc. We have added four more new HPSers to the registry. This puts us at 90 to go on this year's Hundred People Search (HPS). Outreach is harder during the pandemic. We can't attend conferences or hold conferences and outreach events. It is a worry because there is actually a lot going on in research just now, and soon we will really need all HPS hands on deck to push things forward. We need to get creative! 
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Going where no human has gone before

When I was in elementary school, if an adult had asked me what I wanted to be when I grew up, and I’d given them an honest answer, I’d have told them I wanted to grow up to be a pioneer in the later half of the 1800s. I never gave this answer to inquiring adults, time travel being impossible. It was, however, what I really wanted to be. I LOVED the Little House on the Prairie series. I read them over and over. It didn’t hurt that I was lucky enough to touch this era of history, literally touch it, pretty often. My dad was stationed at the Air Force Academy then. Our family spent many weekends on four-wheel drive roads in the back country of Colorado. The mountains were littered with “ghost towns” from the 1800s gold rush. If you went to the towns (and the mines) that could only be reached with an off-road ready vehicle, or more remote still, only by foot, there was so much to find. We were like amateur archeologists. We found town buildings and cabins, some still creakily holding on t
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Pandemics and rejection

I’ve often thought how lucky I am that I’ve gone through life able to avoid direct experience with any major negative world event. I’ve been blessed to have a front row seat to several world events, but not negative scary ones. If you look at history, the usual time between things such as wars, and it really is quite extraordinary. Yes, we’ve been at war, even attacked on Sept. 11, 2001, but I’ve never really felt my life was in direct peril – not really. I’ve never had to think about going without anything I could afford. I’ve never worried that my house would be bombed, or that I’d be kept a prisoner for some, hopefully, unjustified reason.  I still count myself very blessed in this respect. History has marched on though, and it might just have caught up with me.  For these past few months our world, yes the whole world, has been experiencing a pandemic. It has impacted every aspect of our lives no matter where we live. Personal liberties have been curtailed for the good of society a
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Hundred People Search Update

Today we added two new HPSers to the patient registry. This puts us at 94 to go on the Hundred People Search. Please keep up the great outreach! It is our biggest need right now - to grow the database and ensure no one with HPS is left behind. 
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