I’ve recently moved this site from its original home where it was part of my personal blog, to its own address at HLHJournal.com. Nothing should have changed substantially, all of the content found there is now in the new location, all links should be intact. I have also updated the look of the site somewhat to give it a cleaner presentation, and to put more of the posts and pictures on the front page.
In addition to these changes, I have added a community forum. This feature allows visitors a place leave a message, information, or a personal story or anecdote. Simply register at the right of the page with an email address and name (pseudonyms are fine), and leave a message.
I have received numerous contacts in these past 20 months from parents and relatives of children with HLH. Without exception I appreciate these contacts and welcome the opportunity to answer questions and try to help in some small way parents who are trying to work through what Michelle and I have gone through already. We know how hard it is, and we appreciate those who were there to answer questions for us.
My hope is that visitors to the site will continue to feel free to contact me directly via email at firstname.lastname@example.org, however anyone who wishes to leave a public message for others should do so as well.
If there is new research, new procedures, new data of any sort that might be useful, this is one place to post that information where it is likely to be seen by newly diagnosed families searching for answers. If anyone is aware of programs which offer financial assistance or other types of support, that sort of information is also very useful, as going through treatment often requires one or both parents to cut back on or stop working for a time.
There is also a place for families to post their stories where others may see them, shouldthey wish. Currently many of these stories are scattered about the web or hidden behind walls on sites like CarePages, which is fine, but my feeling is that there is also a need for newly diagnosed families to be able to read about others’ experiences.
As always please contact me at email@example.com with any questions or suggestions.