Awareness Coordinators

About the Awareness Coordinator Program

Awareness Coordinators (ACs) are volunteers who raise awareness about CdLS through community activities/events, outreach to professionals and government leaders, and contact with the media. ACs are typically family members or caregivers of a child with CdLS and are passionate about increading awareness of the syndrome.

ACs are asked to:

• Promote awareness in their communities and support others who are interested in planning a CdLS presentation or an event.
• Be available to media working on news features about CdLS.
• Participate in outreach to governement leaders.
• Stay connected with the Foundation by attending conferences, fundraisers and family gatherings, when able.
• Provide the Foundation's director of external affairs with updates on awareness activities, some of which are used in th eFoundation's newsletter and Web site.
• Participate in the Awareness by Month program. The program runs from September through June and consists of suggested 10 awareness activities and the materials to complete them.
• Give feedback and offer ideas for further development of the AC program.

In return, the Foundation provides:

• Support: Assistance with an awareness project or idea is just a phone call away. The Foundation provides materials and giveaways for your activities, as well as assistance with media interviews, letter writing and presentations.
• Opportunity: As an AC, you have the chance to experience professional and personal growth, develop new relationships and contribute to a cause close to your heart.
• Acknowledgement: AC activities are acknowledged in the Foundation newsletter Reaching Out, published every other month. The Mark Etcheberry Award is presented at our biennial national conference to a volunteer, ususally an AC, who has contributed his/her efforts and talent to increase awareness of CdLS and the Foundation. A gift card is awarded annually to the AC who reaches the most people as part of our Volunteer Incentive Program (VIP).