United Brachial Plexus Network, Inc.

Hi everyone, while reading posts today I had a thought on how nice it would be to see a face that matched a name to those that post messages etc. Has anyone thought of setting up a photo album within the UBPN site. A place where people could download a photo, whether it be a baby or an adult. You are all sharing your thoughts, feelings and emotions, why not a photo. I would really be interested in hearing some feedback on the idea. I know when both Michael and I read the posts (because most of you are world away from us down under) we often wonder what the person looks like...... just curious....take care lol Narelle & Michael.

I have also wondered what everyone looks like. Even though I hate having my picture taken, I would do it for this. What does everyone else think?

SusieKaye

excellent idea! i hate my pic taken, too but this would be worth it!

hugs,

jan

One of the committee members of the TBPI Group has two yahoo groups websites that have a few of our ugly mugs on..mostly pics from the last two Squires meetings we had here in the UK. If anyone is interested to see 'em, go to this link http://uk.groups.yahoo.com/group/tbpi-photos/
and it should prompt you to sign up and apply to the the photosite ownwer for approval to view.

You have to be a subscriber to Yahoo and have a password etc etc but it's all free, and once you are up and running, and Yeti has approved you to view the site, everything is pretty much smooth running. I am pretty sure he wouldn't mind anyone uploading pics as soon as you are signed up.

Any problems, email me and I'll pass the email on to the admin on there.

Lizzyb

Hi folks, thanks for the responses. Lizzy thanks for the link, got on today and had a quick look. It would be good if we could set it up within this site. I know you guys have a lot of bpi functions over there and would also be interested in seeing photos from these. Maybe Courtney could put her two cents worth into this topic. I am curious as to how difficult it would be to set up something like this and as a separate "section" it could also be monitored by the board so that no offensive photos were posted as well....anyway still curious to view your comments.

I have to admit I am quite envious of all the overseas posters. You have BPI awareness week and this site to help you all, but on doing research here in Australia, I have found nothing like it. I can't even seem to track down any support groups. Any that I have emailed etc I have not received any response. To me it is really sad, it seems that this injury is not well known or communicated here. I am a very determined person and I intend to change this... how I don't know yet but will put my time into trying. Take care everyone....our best wishes to you all regards Narelle and Michael. (I always sign both of us even though sometimes I post the messages, because we both share what I write)

Narelle and Michael..glad you had a look at Yeti's sites! Hopefully you don't think we are too scary! Check out the main website too...there are more pics on there http://www.tbpi-group.org

About 4 years ago, after I found this site and realised there were more injured like me, I set up a meeting with some of the others in the UK that I 'met' here, plus one or two others who I knew socially anyway, and we had our first TBPI meeting at my house. At the meeting I finally met another female (in fact, two)with a TBPI after 7 years of believing I was the only one.

Since then, we have had another meeting a year later in my house and two other annual meetings at a cafe-bar (Squires) in North of England. Since those small beginnings (8 people with a TBPI and 4 partners at the first meeting) we have grown quite big in numbers as a group (about 150 in the UK)and at the last meeting in Squires, 50+ people turned up.

We have the website and our own messageboards set up since 2002 and we get well over 100 hits a day from the two sites. We have a registration on the site for people who are interested in receiving emailed newsletters and this registration has reached well over 300 now, mostly from the UK and the USA in equal numbers, although we do have people registered from many different countries, some as far away as Singapore, India and Israel . There are a fair few Aussies and Kiwis on there too.

Every day brings us new enquiries and emails and I am certain that the group will grow and many more people will find us eventually, and the Drs treating TBPI will tell their patients about us. We have no idea of exactly how fast the group will grow, but it will.

All this started with an idea bounced around between about 4 people on here, and it was always inhevitable that something would come out of it. Certain things happened pretty quickly, and other people are now (thankfully!)heavily involved in the general week to week running of the group.

What I'm trying to say in my usual long winded way ;0)is it only takes one or two people to get the idea rolling and start something like we have done. I bet when you really start looking in Oz for others with a TBPI you'll be surprised how many there are. Starting a support group does two things; the obvious one of getting people actually to meet in person can be an enormous benefit for all concerned, and as the group grows, it then takes on a life of its own and eventually, the group will have some influence ultimately in the way these injuries are treated, bot initially and long term.

So, there you have it...sorry about the long post...but if you feel the urge to do it then get the ball rolling and find others there and get a group started! If you need any help just ask...always willing to help out if I can!

All the best

Lizzyb

PS heres a piece I wrote for the NPEPA website way back in 2001 I think http://www.nbpepa.org/Start%20a%20Group.htm

Michael, as far as UBPN is concerned we are in the process of getting new software or a new server for the website, Im NO computer master! This is something that the BOD has talked about quite abit! I brought the idea forward after using Yeti's photo site from the TBPI UK stuff! I will keep checking into this still.... we are trying! Maybe I can get together with Yeti, on line that is, he is across hte pond, and see about setting up a yahoo site... I wish I was more of a computer nerd so to speak of, but I am not . I am sure with Yetis help I can figure this out! Maybe it is somethign that you can help me with! Just a thought!

As far as support group thing goes, I can totally relate to that! I didnt even find this site untill almost a year after my wreck. Then I found the UK group! They are great too! I actually wwent over there in August for holiday and went to the gathering at Squires, it was GREAT! UBPN also does a camp every othere year, the next one is in Oct 2005 9as it stands now) we are in the planning stages... Im not sure about airfare from there, its bloody insane here, but have a come for it! I am hoping to get back to the UK again and go to Squires! Its great fun to talk with others who UNDERSTAND what you are going through! Nice perk to know peeps all over the world too, have a free place to crash!! If you get to the states, give me a ring, I will always have free crashing space for FAMILY! hehehe Liz was talking of coming in 2005 for camp, hope it works out!

But as Liz said, it just takes a few peeps to get the stuff running!

Ill keep you posted as things get on! Let me know about hte controller too, I think that was you!

COurt xx