Category Archives: Uncategorized

The CdLS Foundation blog is moving …

The CdLS Foundation blog is moving to http://blog.cdlsusa.org on our brand new Web site. Be sure to check it out at http://www.CdLSusa.org.

Advertisements

Leave a comment

Filed under Uncategorized

Happy Holidays from the CdLS Foundation

http://myemail.constantcontact.com/Happy-Holidays-from-the-CdLS-Foundation.html?soid=1101464950648&aid=y330bWzmVWI.

Leave a comment

Filed under Uncategorized

Families gather in New Hampshire to share, learn and have fun

It was a picture-perfect fall day as nearly 90 people gathered at the New Hampshire shoreline for the New England family gathering September 18. More than 21 families of children with CdLS attended, many with friends and relatives in tow. For five of the families, it was their first time at a CdLS function.

This slideshow requires JavaScript.

Leave a comment

Filed under Uncategorized

CdLS Awareness Day is Saturday. Make your mark.

National CdLS Awareness Day is this Saturday. Consider hanging an awareness flier in your local grocery store or sending a Letter to the Editor to your community newspaper (go to http://www.cdlsusa.org/awareness_day/Awareness_Day_2010.shtml to download materials). And if you haven’t already shared your CdLS story for our story bank, consider doing so. Send it to outreach@CdLSusa.org.

Just in time for Awareness Day, check out this video montage of children with CdLS:

A big thanks to Rachelle (mom to Joey) and her friend for putting this together.

Leave a comment

Filed under Uncategorized

Help the CdLS Foundation win $50,000 for research

The CdLS Foundation is in the running for a $50,000 research grant from Pepsi through the Refresh Everything program. The competition is based on number of votes–the top 10 win–so please vote for this project every day in May.

Go to www.refresheverything.com/cdlsresearch to learn more and to vote for CdLS research.
There you will also find tools to share the info with friends and family through Facebook, Twitter, blogs, and other social media.

Please help us fund important research into CdLS!

Leave a comment

Filed under Uncategorized

Annual Rare Disease Day is Sunday

The CdLS Foundation is a supporter of Rare Disease Day, taking place Sunday. Feb. 28 around the world. Learn more about this event at http://rarediseaseday.us/. You can even share your CdLS story by emailing it to rarediseaseday@rarediseases.org (be sure to send a copy to the Foundation too at outreach@CdLSusa.org.)

Leave a comment

Filed under Uncategorized

Hot off the presses!

The Fall 2009 issue of Reaching Out is now online. This issue is chock full of  news and updates on clinical and molecular research related to CdLS. Just click on the cover below to view the online version. –MM

ro fall 2009 cover

Leave a comment

Filed under Uncategorized