Popping in again to say hello!

[Guest guest]

Hello gang,

I've been AWOL again! Not intentionally though. It's just been busy.

I went to Orlando to give a lecture about Hermansky-Pudlak Syndrome at an albinism conference. Of course, a few friends and I worked in a trip to the theme parks - hey, you can't be in Mickey's town and not visit the home the mouse - it would just be not the thing to do!

We had so much fun. We had a whole gang of HPS'ers. I think it was even more fun than going with my own family because I didn't have to worry about not being able to keep up, or getting sick or whatever. We all had the same issues and everyone was happy to go with the flow and take things as they came. No pressure!

We all got disabled passes - we're all legally blind and half of us have PF or bowel issues that make endurance an issue - so we got to go almost to the front of the lines. It was soooo nice.

My friend and I were the old ladies - is 44 and I'm 36 - everyone else was in their early 20s. One of our HPS friends couldn't join us at Disney, but we took her to Universal. She's only 22 and very badly needs a lung transplant, but doesn't have insurance that will cover it. It's just not right.

I'm not pretty much working full time for the HP'S Network and just operating on faith that somehow the money will come along to pay me. I'm also doing some freelance work again, which feels good and helps offset what the HPS Network can't afford to pay.

My state's vocational rehabilitation program helped me get an office together including a new desk and new computer equipment, plus some adaptive tech stuff. I'm so thrilled!

I'm off this week to man a booth at the American Academy of Pediatrics. We're trying to get them to screen kids with albinism for HPS.

Even when I don't have time to post, I check up on you all. I love it that so many are on facebook so I can get a one-liner all the time on how everyone's doing.

Stay well!

Hermansky-Pudlak syndrome albinism 02 / PF 06

www.heatherkirkwood.blogspot.com