It has been a long time since my last member e-mail but CHERUBS is still here, still going strong and we have tons of new services for CDH families! Our membership is now over 1900, including 1800 parents and 100 medical professionals. You can see all of our activities over the years at www.cdhsupport.org/about/timeline.php. There is quite a bit of news to fill you in on:
We have a new web site! Our new site address is www.cdhsupport.org. Our new web site offers many more services; CDH Research Library, over 100 forums, your own photo album, your own blogs to keep your family and friends updated on your cherubs and/or family, 24/7 chatroom, calendar, and much more. We are now phasing out our listserv programs in favor of our new member forums - this will greatly cut down on everyone's yahoo spam.
Our new site is also password protected so that ony members can view certain sections. This allows for more privacy, as well as the accessibility for members to update their own forms. Our old site was averaging 300,000 hits per month and we expect to see a huge growth in membership within the next year with the new web site. I can't stress to you how excited we are about our new web site! Log in information can be found at http://cdhsupport.org/members/portal.php?topic_id=739
We have 2 contests going on here at CHERUBS! We need drawings from cherubs and siblings for our holiday cards as well as other cafepress items. We also have a posting contest - the member who posts on the new site the most each month will win a CHERUBS t-shirt. Make sure to check out our t-shirts as well as our hundred's of other CHERUBS logo items for sale on our site. We just created "Cherub On Board" maternity shirts for our expectant parents.
We are planning a 2008 International CHERUBS Member Conference. We are undecided on the location as of yet but it's narrowed down to 3 possible locations: Phoenix, Orlando, or Boston. We are currently looking for sponsors and volunteers. If you can help, please contact us. We also held get-togethers in Ohio and Great Britain and our Australia event will take place in October.
Congratulations to CHERUBS UK for achieving Non-Profit status and their own web site. CHERUBS Australia also has their own web site and will achieve Non-Profit status soon as well. We are very proud of both of these groups! All 3 of our organizations are now members of the newly formed group the Alliance of Congenital Diaphragmatic Hernia Organizations, created to band all CDH groups together
We are planning several fundraisers including an Angel Ball, celebrity auction and golf tournament. We also have a new program, Angels for CHERUBS, which will hopefully encourage members to help out in various ways. Donations have greatly decreased in the past few years - despite our membership growing. This has caused us to cut back on services such as New Parent Info Packets and newsletter publication. We recently underwent our first audit by the state of North Carolina and passed with flying colors, however, we have been encouraged to file for Incorporation status which we are now doing.
Last fall we published "Stories of Cherubs", which included stories of over 300 children born with CDH. We encourage everyone to purchase a copy not only for yourselves, but for your cherub's PICU / NICU library as well. This fall, we are putting together our first annual CHERUBS Yearbook with photos of all of our cherubs and families. We are also planning 3 children's books as well.
Our publications are getting back on track. CHERUBS CDH Parent Reference Guide will be revised next week and our newsletter will be out in October. Both will be available to download on our web site. Our CDH Research Survey Results will be published in December. Also, by December we are hoping to have our new site programmed to tabulate research on the fly.
We have many new volunteers, including 2 new Board Members; Betty Mekdeci, Director of Birth Defects Research for Children and Shane Perry PLLC, our new Legal Advisor. We still need more State & International Representatives, Translators, Book Committee Members and are looking for a Flash expert as well as Videographer.
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
Log In Information for New Site - http://cdhsupport.org/members/portal.php?topic_id=739
CHERUBS Member Portal - http://cdhsupport.org/members/portal.php
Public & Member Forums - http://cdhsupport.org/members/index.php
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 - http://cdhsupport.org/members/dload.php
CHERUBS Timeline - www.cdhsupport.org/about/timeline.php
We encourage all of our members to log into the new site and update your information. We welcome you to start your blog and to add photos and links. We also encourage you to forward this e-mail to your cherub's doctor and to any other families affected by CDH.
If you have any questions or any member updates, please feel free to contact me. I'd like to welcome you all to our new site and I thank you for your continued support of CHERUBS.
Dawn M. Torrence, President & Founder
CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Advocacy and Support
270 Coley Rd, Henderson, NC 27537, USA