2011
CORNELIA DE LANGE SYNDROME AWARENESS
CDLS Awareness Firefox Persona
by DELADE DESIGN
http://deladedesign.blogspot.com/
A publication of the CDLS Foundation
Click here for more material from CDLS Foundation.
Post this CAMPAIGN Message to Your Site
Visit the main campaign page:http://www.urlage.com/cdls
Get Involved!
(details below)This 'Help Raise Awareness of CDLS Campaign' originated at:
http://blog.urlage.com/2008/02/blog-to-raise-awareness-of-cdls.html
What is Cornelia De Lange Syndrome?
Cornelia De Lange Syndrome also known as CDLS, is a little known and rare genetic disorder resulting in severe developmental abnormalities.: CDLS Quick Facts :
- CDLS is a genetic syndrome present from birth. There is no cure.
- CDLS occurs in approximately 1 in 10,000 live births. It affects males and females equally, and is seen in all races.
- The severity of CDLS ranges from mild to severe, but all individuals with CDLS share similar characteristics, such as small stature, hands, feet, and head; joined eyebrows; long eyelashes; upturned nose; and thin, down-turned lips. Physical and cognitive development is delayed. Self-injurious behavior is common, and between 60-70% display some degree of autism spectrum disorder. Speech and language are delayed or absent. Limb differences and/or missing limbs occur in 25% of cases. Common medical problems include gastroesophageal reflux disease, bowel abnormalities, heart defects, seizures, and cleft palate.
- Since 2004, changes in three different genes have been identified as causing CDLS. These genes are NIPBL on chromosome 5; SMC1A on the X chromosome; and SMC3 on chromosome 10. Changes in the latter two genes seem to correlate with a milder form of the syndrome.
- In 99% of cases, the gene change that causes CDLS is sporadic, not inherited, which means the change occurs randomly during conception.
- Researchers estimate there are 20,000 individuals in the U.S. who have CDLS but live without diagnosis and/or support services.
: Resources :
- National Organization For Rare Disorders- Genetic Home Reference
- Special Child: Disorder Zone Archives
- Ask the Geneticist
- Google Search - Cornelia De Lange Syndrome
- CdLS USA Foundation Blog
- CdLS World
- Watch the Find One Child Video or order the DVD
[http://www.cdlsusa.org/video/index.shtml]
- Watch the CDLS USA Conference Highlight Video
[http://www.cdlsusa.org/video/index.shtml]
- Book: Cornelia de Lange Syndrome - A Bibliography and Dictionary for Physicians, Patients, and Genome Researchers By Philip M. Parker
: Ways To Help :
Support families in the NICU
https://www.marchofdimes.com/giving/support_nicu.html
Giving Opportunities at St Louis Children's Hospital
http://www.stlouischildrens.org/content/giving/default.htm
Children's Miracle Network (CMN) of Greater St. Louis
http://www.cmn-stl.org/
Donate to support the Cornelia De Lange Syndrome Foundation
https://donate.cdlsusa.org/
Shop iGive.com ... iGive donates a percentage of every purchase when you choose to support the Cornelia De Lange Syndrome Foundation.
Use iGive's free web search service to earn 1¢ for each search to support the Cornelia De Lange Syndrome Foundation.
http://isearch.igive.com/
Click to join Yahoo Group CDLS-kids
Why did I post this?
As the grandparent of a child with Cornelia De Lange Syndrome, I hope to raise awareness of this rare disorder and in turn, bring much needed support to the affected children and their families.This awareness campaign is dedicated to my granddaughter:
AVERY VICTORIABorn in May 2007
We Love Avery Morell Facebook Group
fb.me URL: http://on.fb.me/weloveavery
: Get Involved :
(open to all)Please contact us to donate your time, services or expertise to this awareness project (ie: technical, media, hosting, etc).
Submit a comment to this post with a link back to your CDLS Awareness post or message (for optional networking). Once submitted, I will feature your blog, site, forum or profile message on the CDLS Friends page (terms) with a one paragraph post (option: your text). You may use this posts' content (campaign code), create your own (encouraged) or visit the CDLS Foundation for publications. That's it, need a banner?http://www.urlage.com/cdls/banners New Banners! Sept 2011
Option 1:
Get a banner for your site, blog, forum or profile.
-Choose from over 35 pre-made banners with the html code for hot linking.
-No limit, use as many banners as you need - put one on your site, blog, forum, profile, signature, etc.
-All banners on Photobucket with codes listed as a spreadsheet:
View Spreadsheet: http://spreadsheets.google.com/pub?key=prU6bFXfPZZqBA6bAUzofGg
Download Spreadsheet: cdls-banner-spreadsheet.xls
-Preview all banners and get the html code (Hot Linking Allowed):
http://www.urlage.com/cdls/banners
[http://www.urlage.com/cdls/banners]
-Banners on Photobucket: (Hot Linking Allowed: Direct HTML/IMG, IM or Email and Forum)
http://www.photobucket.com/cdlsbanners
Banner Slideshow
Option 2:
Copy and paste the campaign message 'text' to post on your site, blog, forum or profile (any family-friendly site).
Option 3:
Create and host your own 'awareness graphics' or 'text message' to join the campaign.
Option 4:
Link to this page:
Note: If text is highlighted, then it has been copied.
- If your clipboard is available, the code should be automatically copied after pressing the Copy button.
- If not, press the Copy button to select code (or manually select the code) then, R click, next L click Copy or press both the Ctrl and C keys on the keyboard to copy.
- The code should be copied to your clipboard for easy pasting (Ctrl and V) to your site editor or save to a text editor.
- Contact me, if you need help with linking or the campaign code.
Share this tutorial:
Join the project, together we CAN make a difference!
Disclaimer: Neither I nor this website, are affiliated with or employed by CDLS Foundation or their affiliates, nor am I a relative or friend affiliated with or employed by the CDLS Foundation. This website does not intend to suggest that the CDLS Foundation is affiliated with, approves of or sanctions this site, nor does it imply any association with the CDLS Foundations' owner, registered name, trademark name or holder (if applicable). All information contained here is for personal interest or information to the reader. Neither I nor this website seek or accept monetary (or any other type) gain from this project.
Note
Learn more about donating to the Trust Fund for beneficiary Avery Morell, please visit We Love Avery Morell on Facebook then, contact Justin the Group Administrator (and parent) to request Trust Fund donation information.Don't use Facebook?
Request by Email:
Email Subject: "Request Trust Fund donation information."
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