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CdLS Awareness Day

Awareness Day

National CdLS Awareness Day is observed the second Saturday of May each year in order to shed light on this often misdiagnosed, little-known genetic syndrome.

Since CdLS is unfamiliar to most people, including professionals in the medical community, Awareness Day—celebrated since 1989—is an opportunity to educate all segments of the population about the syndrome.

Each year, parents, volunteers and others request official Awareness Day proclamations from governors and local leaders; hang awareness fliers in public places; make presentations to civic groups or health workers; write their local newspapers; and much more.

How To Get Involved
The CdLS Foundation encourages a variety of awareness raising activities throughout the month of May in honor of National CdLS Awareness Day. Please join families, friends, caregivers, individuals with CdLS, and our team in 2015 to raise awareness. Here are ways you can get involved:

Social Media
​Join our social media “National CdLS Awareness Day” campaign by changing your profile and cover pictures to share how important CdLS awareness is to you! Artwork is available for use in social media. Any other use of images requires approval from the CdLS Foundation.​

Profile Pictures

Cover Photos

Education
Raise awareness in your child's school, or local schools and help educate children about CdLS. For younger children, bring copies of our coloring sheet for them to color and hang up on a wall or bulletin board for awareness day. You can teach children about acceptance, understanding, and that we are all different in some way and that's what makes us special.

Download the coloring sheet PDF

Download the CdLS word search

Awareness Day Proclamations
Each year, parents, volunteers and others request official Awareness Day proclamations from governors and local leaders; hang awareness fliers in public places; make presentations to civic groups or health workers; write their local newspapers; and much more.


Download a sample Proclamation 

Download a sample request letter 

Media Outreach
Submit a press release to local news outlets, or a public service announcement to the local radio station. If you're hosting an event, or activity in your community, please review our suggested talking points.

Advocacy
In 2006, staff and members of the Foundation’s board of directors traveled to Washington, D.C., to visit dozens of congressional offices and educate the country’s leaders about the syndrome. That work continues today, as we advocate for state and federal awareness and support.

If you are interested in raising awareness in your community, view our Raising Awareness Web page for ideas and inspiration. You can also volunteer to become an Awareness Coordinator by emailing Brenda.

Other Awareness Day ideas include:

  • Post CdLS awareness fliers in local businesses
  • Create a postage stamp with the child’s picture on it.
  • Set up an awareness booth at a popular shopping area or town event.
  • Ask a bank or other business to put an Awareness Day message on its marquee.
  • Ask a favorite salon or coffee shop to donate a percentage of the day’s proceeds to the Foundation.

Materials are available by or by calling 800-753-2357.