Our December, 2007 E-Newsletter

Dear Members,

We hope that this holiday season finds you well. We have a *ton* of activities going on at CHERUBS! Please make sure to log in to our new site to keep up with all that we have going on to help families of children born with CDH! CHERUBS now has over 2100 members in all 50 states and 38 countries, including over 150 medical care providers. We have had over 200 members in the past 5 months since our new site went live! Our web site averages over 300,000 visits per month. CHERUBS is growing and helping more CDH families than ever!

Our latest activities:

* CHERUBS Name Change - as of January 1, 2008, our new official name will be CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support. Our new name will reflect the change in society as we go from Advocacy to Awareness, which means the same thing basically! :)

* New CDH Research Web Site - CHERUBS has started on a new CDH research web site for our medical professional members, as well as for compiling and tabulating our Congenital Diaphragmatic Hernia Research Surveys.Our medical professional members will have their own forum there to discuss CDH, and our parent members will be able to contribute to research! We have 150 medical professional in CHERUBS. But there will be public forums for them to post current research studies and publications that you all can read too. It will be a place for all the medical links to research articles, where CDH specialists can msg each other or post to the forum (like we do here), plus all of our CDH Research Surveys can be filled out there and we can tally up the research results from them and our membership form. So all CDH parents can join in on the research surveys and hopefully, together, we can find a common denominator to the cause and prevention of CDH. Also, doctors will be able to post themselves asking parents to join in on research studies. It will become *the* CDH Research Site on the Internet! Estimated completion date is January 28, 2008 so parents and doctors will have all the information they need on CDH at their fingertips!

* Our New Web Site Is A Hit! - members can talk to each other, create blogs, set up their own personal photo albums, read stories of other CDH families and much, much more! Please visit us at http://www.cdhsupport.org. If you have any trouble logging onto the site please contact our New Member Coordinator, Amy, at nmc@cherubs-cdh.org or me at membership@cherubs-cdh.org

* CHERUBS 2008 International Member Conference - July 25th, 2008 in Raleigh, North Carolina. All members are welcome to attend! We are currently looking for sponsors and guest speakers and will book the hotel soon. We will provide childcare during the conference but encourage you to bring a grandparent or sitter to watch your children if you are worried about germs from being in groups. We will also provide lunch and the hotel will provide breakfast. We will get room discounts for those of you who will be staying at the same hotel as the conference will be held and there will be an airport shuttle. You can keep up with more details on our web site.

* Angel Ball - July 26, 2008 in Durham, North Carolina at Duke Gardens. Get out your ball gowns and wedding dresses, this white ball fundraiser will be at a beautiful setting next to Duke Hospitals. We will also be holding a silent auction during the ball, with donations from artists that will all feature an angel theme. It will be held the day after our conference, in the next town so parents are encouraged to attend!

* Golf Tournament - July 27, 2008 in Wake Forest, North Carolina. Another great event in this great weekend! With 2 PGA Tour Pros invited and one of the world's top 5 longest drivers already booked to attend, this golf tournament is sure to be fun and educational! We also have a new car that has been donated to giveaway to the first person to get a hole in one!

* Silver Lining Newsletter - our Fall, 2007 issue is available to download from our site at http://cdhsupport.org/members/dload.php. Our Winter, 2007 issue will be out in January!

* New Board Members - we would like to welcome Amy Rademaker (Secretary), Shane Perry (Legal Advisor), and Betty Mekdeci (Professional Advisor).

* Congenital Diaphragmatic Hernia Awareness Ribbon - our members have voted on-line for a new ribbon to reflect CDH Awareness and we are proud to announce a new, orginal Congenital Diaphragmatic Hernia Awareness Ribbon. You can view the ribbon (which is baby blue, yellow and pink with clouds) on our site. You can also purchase items with this ribbon on our web site at http://www.cafepress.com/cherubs/4069314 or the car ribbon magnets at http://www.supportourribbons.com/m/160153.

* New CDH Awareness Logo - For a more "macho" logo for the dads to wear or for those of you that like to put the location stickers on the backs of your cars, we now have a new CDH logo! You can see it below or on our web site at http://www.cafepress.com/cherubs/3918170

* More CDH Awareness & CHERUBS Fundraisers - CDH Awareness Postage Stamps, Cafepress Items, Ribbon Car Magnets, Valentine's Fundraisers, ATV Ride, Holiday Card Contest, New Awareness Logo and Ribbon, Adopt A Cherub Program, Personalized Awareness Graphics, Coin Jar Fundraiser, Member Yearbook, Music CD, Stories of Cherubs Book, Angel Ball, Golf Tournament, and much much more! Learn how you can get involved in raising funds and/or awareness! http://cdhsupport.org/members/viewforum.php?f=184

* Help CHERUBS to provide information to CDH Families by being a CDH Info Packet Angel! - You can print our Congenital Diaphragmatic Hernia Parent Reference Guide directly from our web site and take copies to your doctors so that the next CDH family that comes along will have information and sources of support. It's just a few cents to print and it would help so much! You can also print inside them "Donated in honor / memory of __________". http://www.cdhsupport.org/members/dload.php Or you can have a Packet Party! Packets include our Parent Reference Guide, brochure, old newsletters, new newsletter, Parent Membership Form, and other hand outs. This is a great project for your family reunion, remember a cherub on their birthday or memorial day for a cherub who has passed away, a fun project at a birthday party for a surviving cherub! http://www.cdhsupport.org/members/viewtopic.php?t=609

* Donate to CHERUBS While Shopping and Searching On-Line - As you start your holiday shopping please remember that every search and every product you purchase through shopping through Goodsearch.com means a donation to CHERUBS! It does not cost you anything to do this, the stores make the donations. Target, Sear and many top department stores participate. All you have to do is go through Goodsearch.com to start shopping! You can go to their site and put in CHERUBS as your charity of choice. Or you can click here; http://www.goodsearch.com/?charityid=856932

* Free CDH Awareness Address Labels - Download and print these return address labels for free, for yourself, family and friends! Every letter that you mail will raise CDH Awareness! http://cdhsupport.org/members/viewtopic.php?t=1136

* Downloadable Information - you can download copies of past newsletters, our Parent Reference Guide, our Brochure and much more at http://cdhsupport.org/members/dload.php

* CHERUBS Timeline - We sure have come a long way, CDH babies! You can view all of our past and present activities at http://www.cdhsupport.org/timeline.php

* CHERUBS On-Line - You can find us on myspace at http://www.myspace.com/diaphragmatichernia, on facebook at http://www.facebook.com/profile.php?id=727837892 and MSN Live Spaces at http://cdhsupport.spaces.live.com/, read the Wikipedia hubbab at http://cdhsupport.org/members/viewtopic.php?t=974, on Justgive.org and Guidestar.org at http://www.guidestar.org/pqShowGsReport.do?partner=justgive&npoId=191819, on MDJunction at http://www.mdjunction.com/congenital-diaphragmatic-hernia, and Blogger at http://cdhsupport.blogspot.com/.

* Adopt A Cherub Program - Adopt a cherub character graphic to post in your e-mail signature, web site, blog, myspace or facebook account or to print - all to raise CDH Awareness! http://cdhsupport.org/members/viewtopic.php?t=1127

* CHERUBS Posting Contest - Every month on our web site, one lucky and talkative member wins a t-shirt! http://cdhsupport.org/members/viewtopic.php?t=675


________________________________________________________

CHERUBS 2008 Event and Fundraising Schedule

January, 2008 - CHERUBS Name Change! CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support
January, 2008 - CDH Research Drive
January, 2008 - Silver Lining Newsletter Issue Published

February, 2008 - Valentine's Day CDH Awareness Poster Sales
February, 2008 - CDH Awareness Media Drive
February, 2008 - CDH Awareness Ribbon Car Magnets Sale

March, 2008 - Congenital Diaphragmatic Hernia Research Survey Results
March, 2008 - CDH Parent Reference Guide Information Drive and Packet Parties!

April 19, 2008 - CHERUBS ATV Ride (Attica, IN)
April, 2008 - Silver Lining Newsletter Issue Published

May, 2008 - Celebrity Auction
May, 2008 - Ebay Member Yard Sales

June 14, 2008 - Michigan Member Picnic (Lansing, MI)
June, 2008 - Texas Member Picnic (location to be announced)
June, 2008 - North Carolina Member Picnic (Raleigh, NC)

July, 2008 - Ohio Member Picnic (Columbus, OH)
July 25, 2008 - CHERUBS International Member Conference (Raleigh, NC)
July 26, 2008 - CHERUBS Angel Ball (Duke Gardens, Duke University, Durham, NC)
July 26, 2008 - CHERUBS Silent Angel Auction (Durham, NC)
July 27, 2008 - CHERUBS Golf Tournament (Wake Forest, NC)

August, 2008 - Silver Lining Newsletter Issue Published

September, 2008 - CDH Parent Reference Guide Information Drive and Packet Parties!

October, 2008 - Australia Member Conference
October, 2008 - Trick-or-Treating for CHERUBS CDH Awareness Drive

November - Silver Lining Newsletter Issue Published

December, 2008 - Holiday Coin Jar Fundraisers
December, 2008 - CHERUBS Tree Fundraiser (Wake Forest, NC)
December, 2008 - Holiday Raffles

Stay tuned to our site for more info!

Conference & Get-Together Information - http://www.cdhsupport.org/members/viewforum.php?f=9

Fundraisers & Awareness Events Information - http://www.cdhsupport.org/members/viewforum.php?f=184

________________________________________________________


Some Important CHERUBS Links:


CHERUBS New Web Site - http://www.cdhsupport.org

Register / Sign Up with CHERUBS - http://www.cdhsupport.org/members/profile.php?mode=register

CHERUBS Member Portal - http://cdhsupport.org/members/index.php

Donate to CHERUBS - http://www.cdhsupport.org/donate/index.php

Public & Member Forums - http://cdhsupport.org/members/index.php

CHERUBS Silver Lining Newsletter - http://www.cdhsupport.org/newsletter

CDH Research Library - http://cdhsupport.org/members/links.php

CHERUBS Photo Albums - http://cdhsupport.org/members/album.php

CHERUBS Member Albums - http://cdhsupport.org/members/album_personal_index.php

CHERUBS Member Blogs - http://cdhsupport.org/members/weblogs.php

CHERUBS Volunteers - http://www.cdhsupport.org/volunteers

Downloadable Information About Congenital Diaphragmatic Hernia - http://cdhsupport.org/members/dload.php

CHERUBS Timeline - http://www.cdhsupport.org/about/timeline.php


I know that this holiday season is so hard on so many of you who just lost your cherubs or who are still struggling with medical issues with surviving cherubs... please know that you are in my prayers and that all of us are here for you, just a click away.

Thank you, each of you, for your continued support of CHERUBS and families affected by Congenital Diaphragmatic Hernia. Please remember CHERUBS in your end of year donations by making a tax-deductible donation to help us to reach and support more families. You can donate by mail at CHERUBS, 270 Coley Rd, Henderson, NC 27537 or on-line at http://www.cdhsupport.org/donate/index.php.

May you all have a wonderful New Year!

Sincerely,
Dawn M. Torrence

President & Founder, CHERUBS
Also mom to Shane (1/28/93 - 9/11/99) LCDH x6, multiple complications and birth defects

Congenital Diaphragmatic Hernia Awareness Day

For more information on why CHERUBS is not participating in the Congenital Diaphragmatic Hernia Awareness Day event with Breath of Hope, Inc or using the turquoise ribbon - along with our struggle in being accused of infringing trademark by using the phrase "Congenital Diaphragmatic Hernia Awareness", please go to our web site at http://cdhsupport.org/members/viewtopic.php?t=1099 or the court timeline at http://www.cdhsupport.org/elizabeth

We do encourage all CDH parents to receive as much support as they can from as many places as they can. No CDH parent is excluded from CHERUBS - you can be members of both groups. Please view the above link for more info.

Please also note that there is a Congenital Diaphragmatic Hernia Awareness Ribbon that is original in design and not shared by any other cause. Please feel free to use it to promote CDH Awareness!



------------------


Addition to post:

You can now download the court transcript from our downloads section or through http://myfreefilehosting.com/f/3170648782_91.44MB

It is 93 MB, this court case is at the end of the record. It is in dcr format, zipped. You can download the software to listen to it from http://www.libertyrecording.com/LR_main.htmLP_Download

2008 Fundraising, Awareness and Get-Together Events Schedule

January, 2008 - New CDH Research Site!
January, 2008 - CHERUBS Name Change! CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support
January, 2008 - CDH Research Drive
January, 2008 - Silver Lining Newsletter Issue Published

February, 2008 - Valentine's Day CDH Awareness Poster Sales
February, 2008 - CDH Awareness Media Drive
February, 2008 - CDH Awareness Ribbon Car Magnets Sale

March, 2008 - Congenital Diaphragmatic Hernia Research Survey Results
March, 2008 - CDH Parent Reference Guide Information Drive and Packet Parties!

April 19, 2008 - CHERUBS ATV Ride (Attica, IN)
April, 2008 - Silver Lining Newsletter Issue Published

May, 2008 - Celebrity Auction
May, 2008 - Ebay Member Yard Sales

June 14, 2008 - Michigan Member Picnic (Lansing, MI)
June, 2008 - Texas Member Picnic (location to be announced)
June, 2008 - North Carolina Member Picnic (Raleigh, NC)

July, 2008 - Ohio Member Picnic (Columbus, OH)
July 25, 2008 - CHERUBS International Member Conference (Raleigh, NC)
July 26, 2008 - CHERUBS Angel Ball (Duke Gardens, Duke University, Durham, NC)
July 26, 2008 - CHERUBS Silent Angel Auction (Durham, NC)
July 27, 2008 - CHERUBS Golf Tournament (Wake Forest, NC)

August, 2008 - Silver Lining Newsletter Issue Published

September, 2008 - CDH Parent Reference Guide Information Drive and Packet Parties!

October, 2008 - Australia Member Conference
October, 2008 - Trick-or-Treating for CHERUBS CDH Awareness Drive

November - Silver Lining Newsletter Issue Published

December, 2008 - Holiday Coin Jar Fundraisers
December, 2008 - CHERUBS Tree Fundraiser (Wake Forest, NC)
December, 2008 - Holiday Raffles

Stay tuned to our site for more info!

Conference & Get-Together Information - http://www.cdhsupport.org/members/viewforum.php?f=9

Fundraisers & Awareness Events Information - http://www.cdhsupport.org/members/viewforum.php?f=184

Please help CHERUBS to provide information to CDH Families!

Help CHERUBS to provide information to CDH Families by being a CDH Info Packet Angel! :)

You can print our Congenital Diaphragmatic Hernia Parent Reference Guide directly from our web site and take copies to your doctors so that the next CDH family that comes along will have information and sources of support. It's just a few cents to print and it would help so much! You can also print inside them "Donated in honor / memory of __________".

http://www.cdhsupport.org/members/dload.php

Or you can have a Packet Party! Packets include our Parent Reference Guide, brochure, old newsletters, new newsletter, Parent Membership Form, and other hand outs. This is a great project for your family reunion, remember a cherub on their birthday or memorial day for a cherub who has passed away, a fun project at a birthday party for a surviving cherub!

http://www.cdhsupport.org/members/viewtopic.php?t=609

New CDH Research Site Underway!

CHERUBS has started on a new CDH research web site for our medical professional members, as well as for compiling and tabulating our Congenital Diaphragmatic Hernia Research Surveys.

Our medical professional members will have their own forum there to discuss CDH, and our parent members will be able to contribute to research! We have 150 medical professional in CHERUBS. But there will be public forums for them to post current research studies and publications that you all can read too.

It will be a place for all the medical links to research articles, where CDH specialists can msg each other or post to the forum (like we do here), plus all of our CDH Research Surveys can be filled out there and we can tally up the research results from them and our membership form. So all CDH parents can join in on the research surveys and hopefully, together, we can find a common denominator to the cause and prevention of CDH.

Also, doctors will be able to post themselves asking parents to join in on research studies.

It will become *the* CDH Research Site on the Internet! Estimated completion date is January 28, 2008!

CHERUBS On Justgive.org & GuideStar.org

CHERUBS On Justgive.org & GuideStar.org

You can now give to CHERUBS through JustGive.org, which is powered by GuideStar.org, a charity watch group.

http://www.guidestar.org/pqShowGsReport.do?partner=justgive&npoId=191819

You can also give directly on our web site at http://www.cdhsupport.org/donate/index.php

All donations are tax-deductible and greatly appreciated! CHERUBS receives no government funding and all of our employees are volunteers. Every penny goes to help raise awareness, give information and support to families and to encourage CDH research.

CDH on MDJunction.com

MDJunction is a new site that has on-line support groups as well as doctor referrals and comments. CHERUBS is now the official CDH Organization of MDJunction! They have also featured our CDH Awareness Ribbon as the official ribbon of CDH.

http://www.mdjunction.com/congenital-diaphragmatic-hernia

It's just been set up and I have to go in and code it to look like our site a bit, but we're there!

On-Line CDH Video!

Courtesy of Children's Hospital of Philadelphia, home of one of our Medical Advisors, our web site now has more information on CDH, incredible anatomy graphics and you can view a wonderful CDH video on-line! Thank you CHOP!

http://cdhsupport.org/cdh/

We have also added a CDH info video narrated by Michael Harrison of UCSF, the founding father of fetal surgery and another one of our Medical Advisors. Thank you, Dr. Harrison for supporting CHERUBS for 12 years and CDH families for 2 decades!!!! :)

CHERUBS At The Top Of The Search Engines!

Despite another CDH Organization trying to have us banned from search engines (http://www.cdhsupport.org/members/viewtopic.php?t=1099), CHERUBS is at the top of the search engines!

Not only are we in the top 10 for all major search engines when searching for "Diaphragmatic Hernia" but now we are #6 on Google for the word "cherubs" so anyone who searches for cherubs will get a good dose of CDH Awareness and we're #1 on Yahoo for a search on "cherubs"!!!!! That's a TON of CDH Awareness!!! :)

Congenital Diaphragmatic Hernia Awareness Postage Stamps

CHERUBS is working with stamps.com to offer Congenital Diaphragmatic Hernia Awareness postage stamps! Along with a few other select non-profit organizations, our postage stamps will be featured on their web site, brining the attention of millions to Congenital Diaphragmatic Hernia Awareness! :)

More details will be posted soon!

FREE CDH Awareness Address Labels

FREE CDH Awareness Address Labels
(well, you have to print them)

Promote Congenital Diaphragmatic Hernia Awareness! Every time you send mail you educate people a little bit about CDH! Use a cherub logo character that looks like your cherub or any of our other logos.

They make GREAT stocking stuffers for friends and family!

http://www.cdhsupport.org/members/viewtopic.php?t=1136&highlight=

Adding our Logo to blogger!

Please don't forget that we have over 100 cherub logo characters up for adoption! There is surely one that looks like your cherub! :)

You are welcome to use them *anywhere*. As your avatar here, on your facebook or myspace account, on your web site or blog - to download them and use them for address labels, scrapbooking, anything!

You can even name your cherub character too. Here's an example below under the dotted line. To use the character of your choice go to http://www.cdhsupport.org/web/adopt.php and find the cherub that you want to use. In the code below change the name adam to whatever name the cherub character is named on our site (all lower case - make sure to use the name of the character there, not the name you want it to have). To change the name of the cherub, edit the name Bobby in the coding below. You can also change "I adopted my cherub" to something like "I support CHERUBS in honor / memory of _______".

Of course please feel free to use our CDH Awareness Ribbon or CDH Awareness Logo as well! :)

-------------------------------------------------------------

I adopted my cherub, Billy
from CHERUBS to help raise awareness for
Congenital Diaphragmatic Hernia

2008 CHERUBS International Member Conference & Events!

http://www.cdhsupport.org

Still in initial planning stages and we are trying to drum up sponsors but the dates are locked in!....

CHERUBS Conference will be held 1 day this year - on Friday, July 25th. We will find a hotel with a conference hall that will give us discounts. It will also have an airport shuttle. We will also find sitters for the kids in an ajoining room, plus entertainment for the kids (magician, clown, storyteller... working on that). Breakfast will be provided by the hotel and we're working on lunch and dinner. As soon as we have a hotel locked in, I will let you all know!

The Angel Ball will be a formal affair held at Duke Gardens. We have booked their reception hall for July 26th, 6:00 pm to midnight. They are giving us an incredible price, which sponsors will cover. The garden is just gorgeous, it is absolutely fairy tale beautiful. We can have the conference hall, which is great in case it rains. The conference hall comes with a beautiful lily pond right outside with a formal oriental type garden and we'd have to get a couple of tents too because the hall only holds 150 people and I'm planning to sell about 400 tickets. The English Gardens can be toured until dark (9:00 that time of year) and will make for awesome photos. I'm still begging to be able to have the ball there, we'll see what I can pull off. Wink We'll also have a silent auction with donations from artists (we have 2 pieces already). Durham / Raleigh / Chapel Hill has a huge artist community, so we should be able to pull that off. Attire will be black tie, with an emphasis on "white" and women will be encouraged to pull out their old wedding dresses and wear them again. We have several wedding service vendors who have already volunteer their time and services and we're hoping to really play up the whole wedding dress thing as that will sell more tickets. Of course all CHERUBS members are encouraged to attend! You can see Duke hospital from the Gardens so there is a top hospital here, plus tons of hotels and I'm 90% certain we can get a group of nurses to watch any cherubs for a few hours that night - I know a ton of nurses who work at Duke that I might be able to beg to volunteer for us. Plus, UNC is just up the road too in Chapel Hill. During the day, before the ball, the gardens is a wonderful place to take the kids to walk around, feed the ducks and picnic. Maybe we can have an informal member picnic that day, though I don't know how much time I'll have to attend because I'll be swamped with the Ball arrangements.

Golf Tournament on Sunday. Actually, the golf tournament will be in Wake Forest, which is north of Raleigh, about 40 minutes from Durham with the traffic. There will be a car given away to the first to hit a hole in one!!!!!!! One of the local dealerships is donating to a car if any player achieves this feat. There are a couple of golf pros who live in the area so I'm going to see if we can get them in the tournament. Craig is good friends with one of them but I don't think he'll be able to attend that weekend as it's in the middle of PGA tour season, but I will certainly beg him to try to come. Smile We will definitely have 1 former pro in attendance, but he was on the tour many years ago and only for a couple of years so his name isn't very well known. ***News flash - we now have one of the top 5 World's Longest Drive Champion's attending the Golf Tournament! We are looking for sponsors for each hole and volunteers to help with the tournament.

***** We quite possibly have a food sponsor and beverage sponsor. We also might have a great band who had a top 40 hit.

We have *tons* to do and could use any help possible!

As soon as we have more / know more, I will post it! Any suggestions welcomed!