Raise Awareness

Advocacy is defined as “the act or process of supporting a cause or proposal.” (Merriam-Webster) 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 federal awareness and support.

The importance of advocacy and to raise awareness is to help families feel less isolated and help individuals with CdLS receive an earlier diagnosis.

In order to raise awareness in your hometown and in the medical community, we rely on the volunteer efforts of the families we serve to help us spread the word. We are hoping to increase education in neighborhoods, schools and the medical community by reaching out to local schools, organizations, hospitals and medical offices.

Click the link below to request your advocacy packet, which will include a USB with a PowerPoint presentation you can go through with medical staff, as well as our awareness video. You’ll also receive various printed marketing materials available from the Foundation to share at your presentation.

In our CdLS Foundation Media Room you’ll find press releases, links to CdLS-related print and broadcast news coverage, and our online press kit, which contains downloadable images/materials and basic facts about CdLS for use by the media, students and others.

National CdLS Awareness Day

National CdLS Awareness Day is observed on the second Saturday of May each year in order to shed light on this often misdiagnosed, little-known genetic 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 to their local newspapers; and much more.  

The CdLS Foundation encourages a variety of awareness raising activities throughout the month of May in honor of National CdLS Awareness Day.

 

Here are ways you can get involved:
CDLS
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.

Visit the Foundation's Facebook Page »

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 »

Download the 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 Proclamation Sample »

Download a sample request letter »

Elevator Pitches

Elevator pitches are an old trick of the trade for journalists and marketers. The idea is to sell your story or idea in 30 seconds or less. The goal is to be impactful, personal and make your audience want to know more. Try one of our sample elevator pitches this Awareness Day!

Download our elevator pitches »

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.

Download Talking Points »

Download a sample letter to the editor »

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.

If you are interested in raising awareness in your community, email the CdLS Foundation or by calling 800.753.2357.