Hello all,

I'm now maintaining the hdsatexas.org Web site and am entertaining the notion of a monthly email newsletter to support the various support groups that are operational in Texas and also individuals that do not have access to a local support group.

So I was wondering, what would a monthly e-newsletter focusing on Huntington's Disease need to provide for you to go to the effort to subscribe to it?

Your feedback will be invaluable.

Thanks,
Steve Ireland

You are now doing 3 websites? 4?

Man, that must be one helluva bag of chips and cokes sitting around that computer of yours.

wine and cheese man....I run a class act.

Is this just for Texas people?

I believe like many HDSA chapters/affiliates, most information included would be appropriate for any person anywhere.

However a state focused newsletter usually also covers events, fund-raising activities just for that state as well as state specific advocacy initiatives.

I could be wrong, but I don't believe that HDSA chapters nor affiliates limit their subscribers to just those in that state.

Here is my list of topics that I thought would be candidates for inclusion in a newsletter.

* Caregiving Education (Tips for HD, JHD, Social Workers, mid-stage, advanced stage, etc...)

* Hot Topics (discussions that seem to be of current interest on message boards, etc) This would be to remind people of the value of periodically visiting HD specific message boards.

* Advocacy Inititatives (State specific as well as national level)

* News from Support Groups (Fund-raising activities, who they are, where they are, tips for creating a support group, and the availability of cyber-support groups)

* Research and Clinical Trials (Latest research, and status of ongoing trials)


What am I missing?

how often would it published? maybe highlighting a family or PHD, someone who is beating the odds, living a full productive life, etc in spite of HD. i find it very uplifting to see and hear from others who are experiencing the same feelings and to see how they deal with it.

also, a section on at-risk individuals, maybe have contributions from at-risk folks would like to share experiences....also, maybe why some have chosen to test, how they came to want to know and what they've done with their knowledge whether it be + or -.

I'd say there needs to be information on how to form these groups in the newsletter. How to maintain the group, etc.

Tips like that could help promote the growth of this type of activity.

What I am always looking for and what I would like to read is about experiences that people have (and want to share with us) with supplements

A history or genealogy thing would be interesting to me. There are many folks trying to link some of these HD families together. Plenty of people went to Texas in the 1850's to 1890's. There are lots of folks in Texas with HD. Where did they all come from?

Great feedback. I will add those to my list of elements to include.

THANKS!

I think the newsletter would be a great idea. The main thing I would like to have is a list of dates for support group meetings. I know you already said that, but it is the first thing that comes to mind.

Lisa