Tuesday, March 11, 2008

CHERUBS Winter 2008 Newsletter Issue is out

Our Winter 2008 issue is out!


Includes information on our events, conferences and get-togethers, CDH awareness activities, stories and photos of children born with Congenital Diaphragmatic Hernia, CDH research studies and much more!


Because we have had problems with unstable stalkers in the past, please note that all CHERUBS posts here, on our site and other sites (including MSN, MySpace, Facebook, Craigslist, Yahoo, any other message boards, etc) are tracked and that documentation can be used for any reasons our lawyers deem necessary.

Monday, March 3, 2008

CHERUBS 2008 International Member Conference - Book Rooms!

2008 International Conference for Families of Children born with Congenital Diaphragmatic Hernia.

Now you can book your rooms for the conference!

Details here - http://www.cdhsupport.org/members/viewtopic.php?t=1442&highlight=

July 25 & 26, 2008
Raleigh - Durham, NC

For all CHERUBS members!!! You *must* be a member to attend so make sure that you join!


To CDH Parents & CHERUBS Members - we need your help!

From our listservs and web site....

Hi Everyone,

This is going to be blunt and I'm sorry if it sounds cold but I'm having to put on my "business hat" here because this is extremely important...

I'm trying to wrap up the latest issue of our newsletter and in our newsletters we always list our State & International Representatives. We're about to lose severals Reps because they haven't turned in their reports (come on everyone - it only takes 10 minutes, please get them in!). Rather than list our current list of Reps and have it inaccurate because so many Reps are AWOL, I think maybe it's best to just leave those states or countries blank so that volunteers can come forward who want to be Reps.

Our State & International Representatives are the middle people for us... we have over 2200 members now. Back when we had just 50 members on these lists we could keep up with everyone. I remember when I knew everyone's spouses, kids, birthdays and street addresses by heart. We have too many members now for me to do that. We *don't* want to lose that close-knit small group feeling so that's where our Reps come in. They keep up with members in their state / country, make sure that they have info, prayers or support when they need it, someone close by with experiences with the same hospitals. They also make sure that hospitals in their states or countries have brochures and information so that when a new or expectant baby is diagnosed these parents have information on CDH and where to turn for support. Without Representatives in these states and countries, these services are not provided. Parents don't have the information and support that they should be getting.

We also have started a new Rep service (not sure that's the right word).... we are trying to get 2 Reps for each state and country - 1 grieving parent and 1 parent of a survivor. We have a lot of states and countries that not being served. We need *help*!!!!

..Those of you who have lost your cherubs and want to find a way to do something in their memory... this is the perfect avenue to do that. Those of you who still have your cherubs and want to find a way to give back or pay tribute to your blessing... again, this is the perfect avenue to do that. Support and awareness every day, helping families one on one. Making a difference in the lives of families devastated by CDH.

If you a State or International Representative and you haven't sent your report in, we need it by noon tomorrow. We have a lot of families to help and we need those positions filled and functioning. No offense, I know some of you have busy lives or are grieving or raising sick children - we understand that and it's ok if you can no longer volunteer. We are just trying to help as many families as possibile and we need a smooth running volunteer system to do that. If you still want to volunteer, you *must* log onto the new site and keep up with the volunteer forum. Shelly, Stephanie and I have all practically begged you to log in and get your reports in... we have too much to do, we can't beg anymore. It's taking away time better well spent helping families and working on other projects.

If you would like to volunteer, please read over the volunteer section at http://cdhsupport.org/volunteers/ Print off and sign the Volunteer Rules at
http://www.cdhsupport.org/volunteers/rules.php. If you'd like to be listed in this newsletter, we need those in ASAP (by noon tomorrow) so please fax them to 815-425-9155. You can also print them, sign and scan them and e-mail it to volunteer@cherubs-cdh.org for the newsletter deadline but you must also mail them in as well. You must be a member of CHERUBS to volunteer and though you can belong to any other CDH group, we ask that you only officially volunteer for one or it would be a conflict of interest.

If you have any questions, please e-mail me at volunteer@cherubs-cdh.org or our Representatives Volunteer Coordinator, Stephanie, at solivarez@cherubs-cdh.org

Thank you all! We know that lots of you will stand up and volunteer to help CDH families!


CHERUBS is given a place in history on Wikipedia!

Wikipedia never gives individual pages to support groups or even small charities, not without some historical or public significance. I've known of several groups who were deleted from just posting on Wikipedia for blantant commercialization. It was in removing one of those groups from a page about CDH that Wikipedia contacted us after looking at our site and asked if we would like a place in their on-line encyclopedia. Of course we said YES!!!!!!! :)

We had to fight with some Wiki staff who weren't sure we should be there, not even with our legislative petitions, all of our awareness activities, etc. It was a hard argument but 13 years of work, being the world's largest and first CDH organization, having the world's largest parent database for CDH and the fact that we've been in medical journals won them over!!!!

This is a HUGE achievement for CDH Awareness!!!! :)


Wikipedia Officially Recognized the CDH Awareness Ribbon!!!

Wikipedia has officially recognized the blue, pink and yellow ribbon with clouds as the Congenital Diaphragmatic Hernia Awareness Ribbon! This ribbon was voted on by CDH families and is the only ribbon of it's kind! Way to go all of you wonderful CDH families!!!!! :)


CDH on YouTube... chosen charity raising lots of awareness!

I have some really great news for us CDH families! YouTube has chosen CHERUBS as one of their chosen charities and they even sent us a brand new Flip video camera to help bring more CDH Awareness to their site! We will be using it at conferences and events and to interview CDH families. We are really excited about this because YouTube is a huge site and this will bring a lot of awareness to a lot of people! :)

Also, we are putting together several videos - including one for parents of newly diagnosed CDH babies that the doctors will be using. We are really excited to be working with the medical community to help expectant parents and to do this job right, we need your help! Please submit any videos that you want included to our YouTube site and our great video volunteers will be using those videos for the CDH Informational Video. The more CDH families that participate, the better, because all of our stories are so different. By the way, these videos will also be going to television stations as well! :)