The HDLF.org site is going through something of a renewal (or a reset). As many of you know Marsha has been providing her "research updates from a family perspective" on the HDSA.org Web site for a long time, but starting in 2013 those will premier on the HDLF.org Web site. We are also planning on a update to the Research Pipeline which should be very soon.

To prepare for that we are reworking the HDLF.org site to make it even more effective in achieving its mission.

The Web world has changed quite a bit since the original HDAC.org and HDlighthouse.org sites were created in the late 1990's. I honestly thought that the message board might actually go the way of the dodo bird because of Facebook and Twitter. But that didn't happen. The noise level of those sites discourage us from talking about issues of most concern to us. So finding a quiet place where everyone honestly "feels our pain" is still important and that's what HDLF.org provides.

In addition we will be renewing our effort to provide family stories ... after all we are "For HD families ... by HD families".

For Twitterians, if you want to be notified via Twitter when a new article, significant change to the site, or a significant HD announcement is made you can follow us at https://twitter.com/HDLF_org.

Fore Facebookalites, if you want to be notified for the same reasons then you can "like" our HD Lighthouse Family Group


Stay connected!
Steve

Steve,

I don't tweet, but I tried to "like" the FB site. I couldn't find that option, but I did request to join the group. Is that what you meant?

Will

Thanks for helping me figure this out Will. I thought Groups were joined by "liking them". I've been out doing lawn cleanup leaves all day today so it took awhile to see your post but as soon as I saw it I accepted the pending requests to join it.

Thanks so much. Please don't tweet, etc....don't think I can learn something new (ha, ha). You and Marsha provide such an invaluable service to us all. The time and effort you devote is not taken for granted. This is a family. Although my wife doesn't visit the site she may in time. Her sister has and I am very thankful for that opportunity.

Mike