We interrupt this blog for a little housekeeping business.
This blog has had a kind of evolutionary history.
In the beginning I hoped to document my personal experiences and emotions living with Hermansky-Pudlak Syndrome. I chronicled my experiences in the drug trial, participating in the documentary etc.
Then it sort of became a news site for HPS news. This was before the HPS Network's current Website (www.hpsnetwork.org) that allows us to update news easily and quickly. It was before Facebook and Twitter.
As my work with the HPS Network grew and grew, especially in the last five years, I haven't been as good about updating the blog. Honestly, it's for a lot of reasons. The Network has a lot of social media outlets now, and I keep them up for the most part. That is a very time consuming job, even when you find techie short cuts.
The other reason is often I can no longer share my personal experiences about living with HPS because it might mean giving away things said in confidence with another HPSer. I have to be very careful because I don't want to betray a confidence.
Now, I'm trying to make a promise to myself to blog at least once a month.
There are just things that need to be said in the community that can't get said in a twitter or a news story. I feel like we're losing part of the history and experience that binds us together.
Sadly, however, I have disabled comments. I really, really, hated to do this. In the past I've connected with new HPSers via the comments section. I've had meaningful feedback through the comments etc. I didn't want to give in to the spammers that are ruining so much of what is great about the Internet.
Technology is changing outreach though. The blog's readership isn't what it once was and that's okay. My goal wasn't to collect the most readers. It was to record things. Now, besides people calling the Network from the Website, our best social media outreach tool through which we find new families is facebook.
So, because of my e-mail overload, I am discontinuing the comments section. At least 98 percent of the comments are just spam. If you need to find me, you should find me through the HPS Network (I'll find a way to post the contact info on the edge of the page. The website is on the blogroll as well.) You can also find me on facebook. I know I'm not the only Heather Kirkwood there, but my photo is on this page, so you should be able to figure out which blonde Heather Kirkwood living in Overland Park, KS is me! Grin!