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...
This is Maryann Mulloy and Denise Miles, both of whom are long time HPS Network volunteers. They've helped out with conference since long before I even knew I had HPS. Often people wonder why we don't move the HPS Network conference around the country. There are several reasons, but perhaps one of the biggest ones is our volunteers. To keep the costs down we have an army of volunteers that have been with us for years. They know the system. They know the kids in child care. They know our members. They simply couldn't be easily be replaced by volunteers without that kind of connection to the very special needs of our members. They are simiply wonderful.
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