CHERUBS- The Association of Congenital Diaphragmatic Hernia Research, Awareness, and Support

CHERUBS :: Portal

CHERUBS - Congenital Diaphragmatic Hernia Research, Advocacy & Support

FAQ • Search • Preferences • Register • Shop • Donate • Profile • Inbox: Log in to check your private messages • Log in

Portal Forum Links Album User Albums Blogs My Blog Shoutbox Calendar

Calendar

Wed 19 Nov 2008

Grayson Ranae Enoch
Zoe Amelia Stevenson
Philip Meade Austin

Thu 20 Nov 2008

Colin Joseph Verwiel
Jack David Doy
Griffin Winn Vaughn
Colin Joseph Verwiel
Mateo Santos
Cameron Anthony Kennell
Colin Joseph Verwiel	...
Aaron Ray Fishgrab
Colin Joseph Verwiel
Mateo Santos

Fri 21 Nov 2008

Alicia Michelle Halley
Augustus "Gus" B G
Cameron Anthony Kennell

Sat 22 Nov 2008

Elizabeth Anna Gilbert
Samantha D. Johnson
Nathan Barber
David Valera Angil
Sarah Elizabeth Rehm

Sun 23 Nov 2008

Mon 24 Nov 2008

Gavin Robert VanBrocklin
Sarah Elizabeth Rehm

Tue 25 Nov 2008

Reilly Caleb Ayers
Zachary Roger Nickerson
Sterling Bowen McCaw
Kassidy Lynn Bumbaugh-Masser

CHERUBS
Portal

Board Navigation
Navigation Portal Forum News Categories Archives Download Latest Tools Recent Topics Knowledge Base Shoutbox Calendar Album Links About us FAQ Usergroups Statistics Contact us

Top Posters
Member	Posts
StephanieOlivarez	4052
Dawn Torrence Williamson	2852
Damon andSharonknott	2476
Corin Nava	2173
KateC	1699
PennyCampsey	1552
karahess	1403
LynneB	1237
AmyMiles	1145
DanielleGolding	1075
TaniaSmythe	987
Chris and TracyMeats	933
LiseDill	713
Barbara and KevinWagner	654
admin	653
FernandaArce	616
donnaeasley80	595
ChristinaTennyson	591
DanielleKessner	578
MaryanneReid	558
KimberlySwitzer	500
JaanaRosenlund	373
JenniferBrown	333
KarlaHolt	318
sarah.deskins	304

Recent Topics

Gabriel's Bowl-A-Thon Fundraiser
by Corin Nava on Thu Nov 20, 2008 6:52 pm

National Children's Memorial Day - December 14, 2008
by JenniferBrown on Thu Nov 20, 2008 12:17 pm

Corin...Tell Us...
by Corin Nava on Wed Nov 19, 2008 12:15 am

CDH Awareness Bracelets - We need your votes!!
by CarlyCashin on Tue Nov 18, 2008 7:21 pm

Congenital Diaphragmatic Hernia Awareness Trademark
by donnaeasley80 on Tue Nov 18, 2008 7:11 pm

Awareness Ribbon Cake for Gabe's Bowl-A-Thon
by JenniferBrown on Tue Nov 18, 2008 11:56 am

Congenital Diaphragmatic Hernia Research Graphics
by Dawn Torrence Williamson on Tue Nov 18, 2008 11:32 am

Calling all teenagers! CDH Skateboards need your designs
by Dawn Torrence Williamson on Tue Nov 18, 2008 10:31 am

CHERUBS T-shirts ON CLEARANCE - $3 kids, $5 adult FCFS
by Dawn Torrence Williamson on Tue Nov 18, 2008 10:22 am

"Stories of Cherubs" Vol. II - submissions we've r
by StephanieOlivarez on Mon Nov 17, 2008 11:32 pm

AVON Fundraiser for CHERUBS
by Damon andSharonknott on Sun Nov 16, 2008 1:55 am

Cooking with Cherubs Vol. III ?????
by Damon andSharonknott on Sat Nov 15, 2008 8:19 pm

Photographs of over 500 children born with CDH
by MelissaKelly on Tue Nov 11, 2008 12:49 pm

Finally the government caught up on something we've known
by Dawn Torrence Williamson on Mon Nov 10, 2008 11:50 am

Way back when...
by StephanieOlivarez on Sun Nov 09, 2008 10:27 pm

Recent Files
» CHERUBS 2008 Federal ... » CHERUBS 2007 Federal ... » CHERUBS 2008 NC Lisce... » CHERUBS 2007 Annual F... » 2008 CDH Conference B...

Statistics
We have 2603 registered users The newest registered user is miracle2007 Our users have posted a total of 35250 articles

Newest Pics

Pic Title: Thibeau, Adam Alexander Poster: Dawn Torrence Williamson Posted: Tue Nov 11, 2008 5:23 pm View: 5 Comments: 0

Pic Title: Abraham, Mitchel Poster: admin Posted: Sat Jan 20, 2007 2:45 am View: 354 Comments: 0
[ Album ]

CHERUBS - Congenital Diaphragmatic Hernia Research, Advocacy & Support
Welcome to CHERUBS The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support We invite all CDH parents and medical professionals to join our free membership to access our on-line services.

National Children's Memorial Day - December 14, 2008

Posted on Wed Nov 19, 2008 11:22 am by Dawn Torrence Williamson

http://www.compassionatefriends.org/

Every year since 1997 CHERUBS members have participated in National Children's Memorial Day. This was started by Compassionate Friends in remembrance of all children lost and they have 1000's of volunteers who work very hard to have this day passed every year. This includes children of all ages, including those not yet born, and includes children lost from all diseases, birth defects, accidents, murders, suicides - ALL children. Because we have several cherubs who were lost over 1 yr old, the Pregnancy and Infant Loss Day didn't encompass all of our cherubs - National Children's Memorial Day does. It also allow grieving parents to meet with other local grieving parents in their areas. This event occurs every year on the 2nd Sunday of December and proclamations by the Senate and President are signed. Proclamations are also signed by other heads of state around the world.

Each year, most of our grieving families light candles at 7:00 pm - with each time zone this creates a continuous light around the world for 24 hours. Many of us light candles for our cherubs and for other cherubs as well. I invite ALL members to participate this year. This includes those of you who still have your cherubs - please light a candle for those cherubs lost, in honor of your miracle and blessing of still having your cherub here.

Some of you may know, I have had many miscarriages. I light candles for those babies as well and light candles for many cherubs. I started doing this in 1997 and in 1999 I had to add a candle for Shane. That first year his candle (a tealight) caught my coffee table on fire. 20-something candles on the table for my babies and many cherubs and his somehow got the polyurethane so hot that it burnt a hole in my antique table. I still used that table until last month when I got married and didn't have room for it - I smiled every time I saw that burn mark - like Shane was sending me a sign that he was there. Because the 2 years before, he had been, watching the flames on the candles as his dad and I said prayers for the children lost. And saying prayers for how thankful we were to have him still here. This is why I ask of all you to participate - in joy for our cherubs still here and in memory for those who are not.

Some other things we can do to also raise awareness.... wear CDH Awareness clothing. It doesn't matter what group it's from, what color the ribbon is... just raise awareness. Our Texas members had group candle lighting ceremonies for 2 years. I help a group candle lighting in NC for all local grieving parents (not just CDH) one year. Churches will often include information in their services and programs if you ask. Many churches will let you hold candle lighting ceremonies as well. During the day you could organize a balloon release with the children's names on the balloons (florists will often donate them). Local newspapers usually welcome stories on NCMD and the events held locally. This is a great way to raise awareness of NCMD and CDH. Or you can just gather your family in your home and light candles and say prayers at 7:00.

The week before NCMD, our site will change to black and white and there will be a listing of all the 100's of babies lost to CDH on our homepage, with a candle by each of their names (make sure you check the box to give publishing permission on your Profile so your cherub is included if your cherub has wings). This will stay up for 1 week and it will be a very solemn reminder of just how many cherubs are lost - scrolling and scrolling through a list of names of victims to CDH is heartbreaking when you think of all the families of all these children. We do this out of respect for our grieving families, those who will not get to buy toys for their cherubs this Christmas or watch them build snowmen or celebrate New Year's.

The point of all we are doing for NCMD, of all of this, is let us all participate this year and remember why we are all here - to help CDH families and to try to stop the loss of more babies to CDH.

If you would like to hold a local event, please let us know.

This news item has 42 Views and 7 Comments.

Post your comment

CDH Awareness Bracelets - We need your votes!!

Posted on Mon Nov 03, 2008 1:28 pm by Dawn Torrence Williamson

Due to enormous requests and all the hard work of Kate and Stephanie, we are going to offer CDH Awareness bracelets! We need your votes on which one you all like best. Voting deadline is Thursday. After your votes then we'll get a price (probably $3 to $4 each, depending which one we vote on) and then you will place your order with Steph and she'll be ordering a huge bulk order and mailing out the bracelets in time for the holidays. Thank you so much Stephanie and Kate for all your hard work on this!

Bracelet #1 - Screenprinted with clouds and pink, blue and yellow with Congenital Diaphragmatic Hernia Awareness

Bracelet #2 - White with screenprinted ribbon logos and Congenital Diaphragmatic Hernia Awareness

Bracelet #3 - Black with screenprinted ribbon logos and Congenital Diaphragmatic Hernia Awareness

Bracelet #4 - Standard rainbow with CDH Awareness and www.cdhsupport.org

Bracelet #5 - Standard rainbow with Congenital Diaphragmatic Hernia Awareness

Bracelet #6 - Standard pink and blue clouds with Congenital Diaphragmatic Hernia Awareness - we'd have to order 2 batches (1 blue, 1 pink)

Bracelet #7 - Standard pink and blue clouds with CDH Awareness and www.cdhsupport.org - we'd have to order 2
batches (1 blue, 1 pink)

This news item has 870 Views and 78 Comments.

Post your comment

Congenital Diaphragmatic Hernia Awareness Trademark

Posted on Wed Sep 24, 2008 12:48 pm by Dawn Torrence Williamson

Also, we have a new graphic to help raise awareness of this trademark and the behavior of those individuals who are trying to hurt the CDH community. As you can see, it does not list any CDH organization. You are welcome to use this on your blogs, sites, etc. Please link it back to http://www.ipetitions.com/petition/cdhawareness.

The photo on this graphic is our own cherub, LaneyKate Daniels... is she not adorable? Who can say no to that face? We will make custom graphics as well. Please send photos to bwagner@cherubs-cdh.org and farce@cherubs-cdh.org. Thank you Barb and Fer, our graphics committee! Smile

For more information please see our post in the Members Input forum at http://www.cdhsupport.org/members/viewtopic.php?p=30487#30487

This news item has 493 Views and 16 Comments.

Post your comment

CDH Research Site & Fund

Posted on Tue Sep 02, 2008 4:16 pm by Dawn Torrence Williamson

http://www.cdhresearch.org

This web site is a project of CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support. It is supported by volunteers and funding through CHERUBS, a 501(c)III Non-Profit Organization. Donations and sponsorships are greatly encouraged and appreciated to help keep this CDH Reseach site continuing, growing and leading the search for the cause and prevention of CDH.

CHERUBS Congenital Diaphragmatic Hernia Research Survey is the combined efforts of over 2000 CDH families and medical professionals. It takes information on the medical, family and exposure histories of CDH patients and compares data to look for the cause, prevention and better treatment of Congenital Diaphragmatic Hernia. Participation is voluntary, anonymous and free to all CDH families and medical staff. Data can be tabulated live for research and reference purposes.

A fund has been set up for raise money for Congenital Diaphragmatic Hernia Research at

http://www.firstgiving.com/cdhresearch

You can donate there in honor / memory of a cherub or through PayPal at http://www.cdhresearch.org

This fundraising page is to help raise funds for the software needed to create and maintain secure database hosting for our CDH research database. This database includes information on over 2400 CDH patients and medical care providers - offering a very unique opportunity to research the cause, prevention and best medical treatments for Congenital Diaphragmatic Hernia. Such software and off-site security that is needed for an undertaking this large costs approximately $500 per month. Rather than take funds out of our very small operating cost budget, we are appealing to members and the public to help fund this research venture. Site maintence, design and statistics is being done for free by volunteers. $6000 per year is needed solely for the database design and secure hosting, which is needed to follow federal privacy and HIPPA laws.

Congenital Diaphragmatic Hernia (CDH) is a birth defect that occurs when the diaphragm does not fully form, allowing organs to enter the chest cavity preventing lung growth. CDH strikes 1 in every 2500 babies, of all races, religious backgrounds, and financial status - no matter how well the prenatal care.

Nearly 4 million babies are born in the United States each year. This means that approximately 1600 babies are born with CDH each year - in the U.S. alone! There are more babies born with CDH than with Cystic Fibrosis (1 in 3900) and it's almost as common as Spina Bifida (7 in 10,000) - yet, you probably have never heard of it until it affected someone that you love. CHERUBS is working hard to raise Congenital Diaphragmatic Hernia Awareness!

The cause of Congenital Diaphragmatic Hernia is not yet known.

50% of babies born with CDH do not survive and sometimes the remaining 50% have to overcome very difficult medical complications. Many CDH babies have minor lasting health problems such as feeding aversions, asthma, scoliosis, or short-term oxygen dependency. A small number have major lasting health problems such as ventilator dependency, brain damage, or hearing problems. Many patients have no long-lasting medical problems at all other than a scar from the CDH repair. CDH can occur alone or with other birth defects, and rarely, it occurs as part of a syndrome.

This news item has 262 Views and 8 Comments.

Post your comment

"Congenital Diaphragmatic Hernia Awareness" Tradem

Posted on Mon Aug 18, 2008 12:46 pm by Dawn Torrence Williamson

(posting here in our public News forums so that it will be seen also by those who aren't members - you can respond but please know that it will be public)

An organization has filed to own the phrase "Congenital Diaphragmatic Hernia Awareness".

This means that no one, no CDH family, no other organisation would be able to use this phrase to raise awareness or help CDH babies while this organisation would be sole owner to use awareness of this birth defect as a marketing tool. No one should own awareness of a birth defect that hurts so many babies around the world each year, killing almost half of them. We are petitioning this with the U.S. Patent & Copyright office and need your help.

Please sign this petition and forward this to family and friends:

http://www.ipetitions.com/petition/cdhawareness/

This news item has 115 Views and 0 Comments.

Post your comment

Our CDH Awareness Ribbon is Official on Wikipedia!

Posted on Mon Mar 03, 2008 2:29 pm by Dawn Torrence Williamson

Awareness Ribbons - http://en.wikipedia.org/wiki/List_of_awareness_ribbons

Take a look at the ribbon on the bottom! It's now officially in an encyclopedia that the Congenital Diaphragmatic Hernia Awareness Ribbon is one that parents voted on and is original from any other cause!

[align=center]

Way to go, everyone!!!!!! Happy

This news item has 939 Views and 8 Comments.

Post your comment

New Site Info / Questions / Problems

Posted on Sat Sep 22, 2007 11:17 pm by Dawn Torrence Williamson

You can reply here if you have any questions about the new site. A few bits of info:

To Sign In:

- Members who joined CHERUBS before September 26th have accounts on this site. To retrieve your password, your username is FirstnameLastname (ex DawnTorrence - no spaces) if you joined alone. Spouses would be John and MarySmith, with spaces between first names and the word and. The E-mail address should be your e-mail address that we have in the database.

- If you've changed your e-mail in the past few years and didn't update us then you need to contact us at membership@cherubs-cdh.org and ask to have your new e-mail address added. Include your name, cherub's name, phone number and new e-mail address.

- If you joined after September 26th please register

- If you are unsure if your registration went through (you would have received a member update e-mail if it had), then please send us an e-mail at at membership@cherubs-cdh.org and ask to have your new e-mail address added. Include your name, cherub's name, phone number and new e-mail address. Please do not register again unless we ask you to - we do not want duplicates in the database please.

Other Site Info:

- Click here for information about Adding Photos

- Click here for information about our Calendar

- Use the FAQ up top for most questions on this software

- Change your password, time zone and avatar (graphic/photo) by clicking on Profile up top

- You can send and receive Private Messages through this system to other members

- You must have java and cookies enabled to use our site

- You can add your own blogand make each post private or public and change the design of your blog

- You can add your own personal photo album as well and upload photos of your cherub by clicking on the bottom of the album list to start your own album

- You can add research links or a links to your personal web site by filling out the form to the left on the links page

- Bookmarks are set when you post to a forum so you can keep up with replies. You can change this this setting in your profile.

- Administrators are in Red Type, Advisors in Blue and Volunteers in Green. Administrators and Advisors can help you with any problem you may have. Each forum also has a moderator who has the authority to ban anyone who might stir up trouble.

- You can change your username but let's please keep it to real names so we can recognize each other.

- Member posts to the forums are private and can only be seen by other members.

- Our Calendar will feature the birthdays and memorial days of those members who gave publishing permission on their membership forms. You can change permission setting in your profile.

- The Search function on this member section only works within the member software, not the rest of the site

- Remember your password! We do not have access to your password if you forget, we can only reset it for you. Make sure you keep your e-mail address updated so you can retrieve it yourself if needed.

- We ask that you upload only one photo of your cherub in the main cherub albums of Survivors and Non-Survivors. You are welcome to upload many more in your personal album.

- Please upload conference and get-together photos if you have them!

- If a member is being rude on the forum you can report them by flagging their post. To do so, click on the yellow box in the upper right corner in their post (just above their text).

- Be careful of what you say - we will NOT edit or erase any posts!

- What is said here, stays here. Please respect others privacy by not repeating what is posted here. If a member wants to say something in public, they can post it in their blog.

- We have Rules of Behavior here! We will warn you / temporary ban you 3 times for small infractions and ban you permanently for large social faux paus. If you can't get along well with others, we would rather not welcome you here.

- This is a place of SUPPORT - no gossiping, no cattiness, no rudeness, no mudslinging, no judging the decisions of others, no bashing other organizations, no cursing, no slander, no stalking, NO DRAMA! CDH puts us through enough already. If you can't say something nice then don't say it! This applies off the site as well - troublemakers who can't get along with other members through e-mails or phone calls, etc, will also be banned!

Any questions or problems, just respond to this post!

This news item has 7011 Views and 33 Comments.

Post your comment

Who is Online

In total there are 15 users online :: 1 Registered, 0 Hidden and 14 Guests

mpolacska

[ View complete list ]

Most users ever online was 275 on Wed Dec 19, 2007 4:56 pm

Poll