Tuesday, March 3, 2015

Congenital LLD chat for March 5

Just our usual reminder that there is a chat this Thursday at 8 PM.
Any last minute schedule changes will be posted on our Facebook page: www.facebook.com/limblength

Quick request about emailing us x-rays: Please be sure to put a meaningful subject on any emails that contain x-rays; don't just reply to this email. Use phrases such as "johnny age 5" or "Susie from NY", so that during the chat you can tell Dr. Standard that title to open. And be sure to address them to sstandar@lifebridgehealth.org (no "D" at the end) in addition to this icll address.

Time: 8:00 PM EDT This is the time zone for Baltimore, MD or Washington, DC
Place: http://www.chatzy.com/600868137410 (http://www.chatzy.com/limblength)

If you need a refresher on the instructions or password, please drop me an email. We are using the same password as the last limb differences chat.

COMING & GOING: When you enter the room, remember to press "join chat", and let the helpers know if you are lurking (no questions) or not. When you are ready to leave the chat, please type in either "/bye" or "/leave" (be sure to put in the slash). That way you disappear from our waiting list.
ORDER OF QUESTIONS: New participants are allowed to go first, along with chatters from an area where it is the middle of the night (eg, Europe), providing they are in the chat room soon after the start of the chat. Then everyone else in the order they signed in, although you may trade your positions among yourselves if you would like. We will squeeze in as many chatters as we can, so *everyone* will need to be mindful of the time and you may have to skip some of your questions if we need to put on a time limit.
For Dr. Standard's established patients, don't forget - he now has a "Communications Physician Assistant", so if you have routine questions about PT, meds, x-rays etc, it would actually be quicker to contact Allison. She confers with him every day with a pile of questions, and then gets back to the callers.
X-RAYS: if you are going to send any for Dr Standard to review, please be sure to send them to both him (sstandar@lifebridgehealth.org) and me at this email, so that I can keep track of who has sent them and give him a list ahead of time. If you've mailed us x-rays, please drop me an email so I can keep track. It would also be helpful if you could make sure that you have a copy of the x-rays available to re-email to him, in case he has trouble locating the original email. Alternatively, you can post the x-rays to a site such as Photobucket or Flickr (make sure to make the album public) and then just paste in the address of the album when it is your turn. That really helps to speed things up. If I have to re-forward x-rays to him during the chat, I will send them to his HOME email address to speed up the process; if this is a problem for you, please let me know.
Internet/Chatzy problems: These seem to have been minimized, however, If there is a chatzy problem again, and people cannot get into the room for a half hour, we will consider the chat canceled. If we hear of any outages we will try to post what we know on the ICLL Facebook page - http://www.facebook.com/limblength

Chatzy now has Twitter, and plans to announce system problems at https://twitter.com/Chatzy_com, so if you ever have problems getting in, this might be a site to check.

Hope to see you on Thursday. And if possible please RSVP to this email if you are planning to participate so that we have an idea of how many to expect.

And as a reminder, if anyone wants to be removed from this reminder list, please let me know.


Monday, March 2, 2015

Blog Writer/Editor wanted!

Looking for Blog Editor! - Hey everyone! We are almost at 575 members and adding almost everyday! I'm so thankful you have chosen to be part of this supportive community of family & friends. Some of you know that we have a sister blog site of which I have been quite lax about updating. I'm putting the call out looking for someone who would like to be a volunteer contributor/writer/editor for our site. If interested please contact me privately and let me know. What I would like to know is what is your experience and do you have a vision/ideas? Experience isn't necessarily required but please have good English grammar & writing abilities. I can share full details once we talk privately.

Email Angie at kcangel70@gmail.com


New United Kingdom FH awareness page

A new awareness page for those located in the UK (or anywhere) -  Website/booklet/fundraising and an awareness group and private support group http://www.fibularhemimelia.uk/.