Chordoma

April 2007

Some Management Changes

Millie and Dawn are taking a well deserved break as managers of this group. For newer people, Millie, Dawn and I took over management in 2003 after meeting up in Boston the year before. They will continue to be part of a consulting team for the group. Thanks for all your help!

We are going over to a time limited commitment for managers. Norma - najones111 - is going to become an assistant manager. She will help with membership, admin and concerns. The other assistant manager is Bill - bdorland.

We could use a formal moderator for each message board, a person to keep an eye on it and be available to deal with unanswerable questions. Volunteer here. No money, no perks but lots of satisfaction.

Update Your Profile

Please keep your information up to date. There is a Help file here with ideas. One way to keep an email address available, without showing your home email, is to set up a Gmail (Google mail) account and set it to forward to your home email. Show the Gmail address in your profile, then people can get hold of you with informations and questions.

The sort of thing you might use this for is to share personal information that you might not wish to post on a public site.

Visitors

This is a public view, private posting site. Membership is moderated. Most information is posted on the site but occasionally a message goes out by email.

If you wish to be kept up to date on our activities, please consider joining. You do not have to post messages to remain a member, although we may ask you to check in once or twice a year.

Photographs

Thank you for posting photographs and allowing me to use some for publicity materials.

Check out the latest ones from Harrie in the Netherlands. I really enjoy seeing what people look like and meeting families.

We would love to get some content for this doc! Email us.

Have a nice Spring - or whatever it is wherever you are! It has stopped snowing in the Frozen North at last.
Ann

March 2007

Membership

Thank you for co-operating with censuses and checks over the last year. We think we have everyone on the database and we now have more than three hundred participating members.
If you are reading this and have not posted a message for a very long time, please check in.
If you are not a member but - as a patient or caregiver, you would like to hear about research, contact a Manager here.

Site Changes

We are testing a very plain front page in the hope that the page will load more easily.

The time is coming when we will need to move the site because the MSN server cannot deal with us. This is going to be fairly complicated.

We will need to keep the MSN site open at a minimal activity level to redirect people. There are hundreds of links to the MSN site out there, some of which we didn't ask for.

We will probably need to have everyone register again. No interrogations, just one email from you. Please be sure that the email on your profile, even if it is not visible to the public, is monitored for messages. Please do this even if you are sure that a manager knows your email. We use this address to send group announcements. (When the "Mail Everyone" wouldn't work last year, someone had to send so many individual emails for the research that they got shut down for spam!)

Click Member Tools

Click Check Your E-mail Settings to open a form you can use to check or change email.

Job Jar

I'll be talking to some people about more research soon and to some other people about moving this site to another server.

   Heeeelp! I need a volunteer (or more than one) to do some message counting. Should take about four hours in all.

   Heeelp! If you have a personal page or blog that I could quote to researchers please get in touch here.

Thanks
                       Managers

February 2007

Happy February!

Have you looked at the About Us page recently?

There are thirty one nationalities listed there. People in seventeen countries responded to the Clival study last year. Please take a look here and make sure your country is represented. I think one country isn't there yet.

(OK, I included Scotland and Wales. If you want to know why, find a Scot and say brightly "Ah, you are English...")

If I missed you, email me.
We welcomed six new members this month so far, and fourteen last month.

Members do not need to post messages, or participate in discussions. Some join just to be able to read messages and get announcements and that is fine by us. We do suggest that you spend some time reading the documentation listed on the left of the page.

There's a new Message Board in French.

If you have a language group with at least three people I will make you a Board. You will need to check in regularly - ask me for details. You are also welcome to post a self introduction in your own language. Just add a sentence in English about the content or translate it in a separate paragraph. Everyone is interested in meeting you.

A couple of job-jar items:

We haven't had a redesign of this site for a while. It's Spring - almost - and site designers thoughts turn to updates. One of the things I would like to do this year is add some faces to the site. We have the photographs but there aren't many visible.

I was at a big international medical conference recently with lots of interesting people discussing "Internet Communication in Public Health". The very last speaker was an interesting lady from a British organisation, www.dipex.org who create videos of people with serious illness talking about their situation. She showed some of the videos and the hall went absolutely silent.

It's a pity she wasn't the first speaker, to remind us all that medicine is about people.

I would like to make a montage of faces to add to the front and other pages of the site, partly to show newcomers that we are real people with real lives but also to remind the passing administrator or researcher what it is all about. I do a fair bit of web design when I can, but I never post a picture of an individual without his or her express permission.
Please, if I may use your face, send me a photo with a note. Or, send me an email giving me permission to use a photo on the site already. I'll post an example of a header with faces in the photo section. I'll need about twenty faces. No names.

Thank you everyone for your support of this website, of the members here and your support of me, personally.
I couldn't do it without you.
Ann

January 2007
Welcome to what would have been the January Newsletter if we had been better organised...

As some of you know, Santa brought me flu for Christmas. It took a while to get over and a lecture from a (very) young doctor on the value of a flu shot didn't improve the mood!

We'll be getting the review of the research study this month, and will begin to discuss the next project.

We ran the first study without the MSN mass mailing tool, but we still managed to reach a previously unheard of total participation. We also got a surge in applications for membership, with 13 in the first 15 days of the year. This is getting to be a big group. As the executive manager, I enjoy the contacts tremendously but it is taking up so much time that I am turning to the membership for more help.

We need to get communications established for all members, with each person accessible by email. We now collect an email address for each person who joins but we did not do this in the beginning. People change email these days quite easily. One way of dealing with this is to establish a Gmail (Google) email account which you will post as your contact address, publicly visible or not. You can set Gmail to forward to your main email account. In this way you may be contacted by the automatic announcement without disclosing your main email. You need to be referred to Gmail. We can do that or you can get it from a friend.

We need to get an email reponse from everyone. In a couple of days we will post a message and send out a group announcement. We need you to reply to Ann's personal email address, either confirming that you received the group announcement, or telling her that you have updated your address online. You do not have to share your address with us unless you wish but we will not be able to do the almost individual mailing that we did last time. (I've still got the carpal tunnel syndrome - ouch!)

We need some help. We already get a lot of help from some of the longer standing members but we can use everything we can get.

Here's the job jar.

None of it is rocket science. Some jobs are several hours work over a couple of weeks. Some are regular small jobs every week and some are a five minute job when you come by the site. We really need a commitment for these jobs so that we can check them off on our "taken care of" list.
We need a couple of people to compile statistics for weekly postings, One per forum would be ideal. 30 mins per week each.
We need people to feel free to respond to postings that do not attract a lot of replies. Sometimes we read postings that are so difficult to deal with that we wonder what to say. However I think it is sad to post and get no reply. Some people do this already, we need more.
Please feel free to welcome new members who introduce themselves online. The most valuable thing we can say to each other is "Been here, done that, didn't like it much either..."

On Guard:
Email me if you see anything that worries you. I will deal with it.

Share:
Post some more photos. We would like to set up a "faces of chordoma" collage, but we will need the permission of each person whose picture we use. Don't be afraid to share good new, or bad, come to that. (I've posted some pictures of my travels as an affirmation that my life is going on, in spite of some problems.) We'd love to see your pictures.

And now I am going to boast a bit:

There were 40 registrations when we took over in 2003 and now we have nearly 400, of which I estimate more than 200 are active members....

A member in a South American country was told by the doctor that the person was the first case in that country for 40 years. Not so - we introduced a long standing group member from the country!

We put two mothers together, one in Europe who had taken her child for Proton Beam last year and one in North America who is just beginning the journey.....

We are firmly established as a useful resource for research. More coming up soon!

Happy New Year - better late than never.
Thank you very much for all your kind words and encouragement.
Ann