Words from The Editor -- By Marty Burke

A couple of years ago, all the non board member regular newsletter columnists - mostly for health reasons - begged out, and since we board people too had some health issues - including me - , we "went dark". I waited, buoyed by hope that I'd get  new, regular, contributors again - by miracle, I guess. In addittion, like most of us Ataxics, I have had a series of health problems too.  Combine that with native laziness plus writing and spelling difficulties (my favorite key is the backspace - to correct constant mistakes - so much that I call it the "Ataxia Key").

But, as of now, the Internaf newsletter is back. This one is a bit thin, but it seemed important to get it out to help push IAAD (International Ataxia Awareness Day). So here 'tis.

Future issues will be Quarterly, with the next one scheduled for 12/03.

Many of these articles were originally intended for last IAAD's issue, but it was too late. Better late than never, I guess. So if your article is appearing a year late, my apologfies. It won't happen again.

Most of the past articles have been written  by people who, like  me, have Ataxia and are adult.  I'd still like those, of course, especially since there never fails to be a lesson, an example, or useful information, or just a laugh, for all of us. But in addition, I'd like to get articles by caregivers, parents/spouses/kids of Ataxics, the unique perspective of kids with Ataxia, or from medical people etc.

For example, we all wish for a cure. But if there suddenly were one, I suspect that many of us would actually face a readjustment every bit as traumatic as whatever we went through in the first place.

Write about it!

Here's another ------- I'm an old, white, male of Irish descent and in a wheelchair and married. But what about young people,  or of a different race, or gender, or alone etc. In my case, for example ( have a sporadic form), there have been many coping mechanisms put in place that - until I'm without them - make life pretty easy for me. So, I tend to forget what it was like before them. But my experience is VERY different from those with some hereditary form, or for a child etc. So what would YOU do after the sudden euphoria of waking up cured?

Write about it!

Are you as tired as I am of having to explain what you have for the umpteenth time? Or being told "Its all in your head"? Or medical people who know less than you do about Ataxia? Or people who think you're drunk? Or people treating you like you're stupid?

Write about it!

Are you normal but taking care of one of us and  feeling like you're all alone? Well you're not!

But write about it!

Are you a medical person who knows something about some or all Ataxias? Most of us are quite familiar and comfortable with medical terminology etc. - we've had to get that way to compensate for the widespread ignorance about Ataxia within the medical community.

So write about it.

--
Martin Burke
Newsletter Editor
mrburke@att.net

#Ataxia...........INTERNAF's Chat, News and more... -- By Stacey White

Internaf Mailing List: Behind the Scene

Approximately 18 months ago Michel asked me to assume the position of 'Chat Moderator'. I tried some new ventures and some were successful, although only occasionally. Because of a lack of interest, scheduled chats have all been cancelled EXCEPT Fridays. Checkout the website page for approximate times and directions. http://www.internaf.org/chat/newchat.html

We are still there for some daily open chats and would love for you to stop by. Keep trying until you catch someone there!

A few months ago, I assumed a bigger role in the daily maintenance of the list. Most days I collect articles, somehow pertaining to ataxia from websites, online medical journals, conferences and info members send to me. If members find any info which would apply, please send it to me for posting. auntystac@yahoo.com I try to help when questions are asked on the list when my time allows. I also try to keep ahead of the members on our bouncing list. Members not receiving posts for an extended period of time should write internaf-owner@yahoogroups.com. This is an alias address yahoo groups gave Michel that all moderators receive. Internaf policy is for reminders to be sent privately, each time a post does not follow guidelines, I have also been doing some of those.

Most of the information found on the mailing list is found on the internet, which of course can be found by anyone. If anyone wishes to copy this information, all we ask is could you please add: Taken From Internaf Mailing List or something similar, giving us and our membership some credit for their effort in finding it and sharing it with others.

I enjoy and am very proud of my contributions here. I want to thank the members for their help and encouragement since I began. This is a terrific group and you all should be proud of your contributions. I have a few special mentions to present and former channel operators in #Ataxia ( our chatroom) Scot, for the diplomacy lessons, the humor, the technical stuff but mostly the friendship. Nik, the proofreading, the encouragement and being the best sister I could hope for. Shan, for encouragement, an occasional HUSH WOMAN when needed and forever friendship. Lara, for having no limits when it comes to helping, your enthusiasm and for being one of the sweetest most caring friends I have. Last but certainly not least, Michel, since joining Internaf 30 months ago you have given me so much I am not sure where to start. First friendship, confidence in myself, a good laugh every so often, your respect and of course love. I thank you from the bottom of my heart. As a girlfriend and now as a moderator I get an upclose view that others don't see as to what you put into Internaf. I also thank you for that.

Recent Changes:

- updating of the dominant ataxia page. http://www.internaf.org/ataxia/dominant.html

- some new photos were added to the album. http://www.internaf.org/album/

- A few of the Dr's presentations from the 2nd All California Ataxia Research Meeting (with more to come) were added to the ataxia page on the site. http://www.internaf.org/ataxia/acarm/ACARM2.html

- at the beginning of October we decided to moderate new members for the their first post or 2 to ensure our members do not receive unwanted spam. They will be removed from that status after we see that they are legitimate members.

-a disclaimer was added to the site.

* Please remember all of Internaf's moderators have some form of ataxia. Every effort is taken that all issues are dealt with as soon as possible but due to daily lives and health issues that can take some time. Take Care and Keep Posting!

Stacey White

auntystac@yahoo.com
Internaf Moderator
Internaf-News Moderator
Website: http://www.internaf.org/