Announcing InfoStorm - January 2011

This is an example for me - it will be customised for each member!

Dear Paul

Ian, Iris and I have been working for some time now on getting all your records into a secure online database to make it easier for us to manage them and to make it possible for you to update them yourself. This will also replace the cavernoma@the-hug.net mailing list as our main way of keeping in touch with you (as this email illustrates as it's been sent via the new database).

To set up this database we've imported the data from the web form you filled in when you first joined, added your member number, and updated your email address from your member's story if it's changed since you signed up.

You can see the data we hold on you here* - http://www.cavernoma.org.uk/m-HU3-7PS-H2B

What we'd like you to do now is to click on that link, review the information we hold, and make any changes you want. We'd also like you to fill in two new fields which weren't on the original form:

1. We asked you for “age now” on the original form, which was a mistake because as time goes by you're getting older so the field gets less useful. So now we want to hold your date of birth instead (if you're not happy giving us your full date of birth then please just enter 1st January but the right year).
2. We would also like you to answer the additional question “Symptomatic” and indicate if your cavernoma has never been symptomatic (i.e. it was discovered for other reasons), was symptomatic on discovery but is no longer symptomatic (you lucky thing!), or was symptomatic on discovery and is still symptomatic now.

Once you've filled in those fields click on the “Update” button at the bottom of the page and you're done.

By the way one of the other things we've done while working on this is to tidy up the cavernoma-chat mailing list as some of you had “fallen off” because of changing your email address so you may find you're now re-subscribed. You should see when looking at your details whether or not you are subscribed and you can change that by checking or un-checking the box as appropriate.

If you have any questions on the above then either drop me a line or, if you think your question is likely to be of interest to other members, why not ask via the cavernoma-chat mailing list?

Regards

Paul Oldham
Cavernoma Alliance UK webmaster
http://www.cavernoma.org.uk

* For the security minded this is a secure link. It's done over HTTPS so the connection is encrypted and each member has a unique URL with their own key. There are over 35,000,000,000,000 possible keys and your PC is locked out after three failed attempts so anyone trying to access a record in our database, including our members trying to access details other than their own, without knowing the key won't get very far.