Become A Volunteer
A core component of the Foundation is its volunteers. Hundreds of parents, relatives and friends give their time and energy to help improve the lives of people with CdLS.
Volunteers sit on committees that plan and implement Foundation services and events, as well as participate in the Awareness and/or Regional Coordinator programs.
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 increasing 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 government leaders.
- Stay connected with the Foundation by attending conferences, fundraisers and family gatherings, when able.
- Provide the Foundation with updates on awareness activities, some of which are used in the Foundation's newsletter and Web site.
- Participate in the Awareness by Month program. The program runs from September through June and consists of 10 suggested awareness activities and the materials to complete them.
- Give feedback and offer ideas for further development of the AC program.
Regional Coordinator Program
Regional Coordinators (RCs) are volunteers who are parents or caregivers of individuals who have CdLS. They are generally the first line of contact for parents facing problems or looking for support in caring for their family member with CdLS.
The program assures that families are provided with the emotional support and essential information needed when caring for an individual with CdLS. By providing one-to-one contact and matching families who have experienced similar issues, the stress and isolation an individual family may feel will be reduced. Parenting confidence increases as they find additional ways to access information and support made available through RCs. Ultimately, the program furthers the CdLS Foundation’s goal to enable caregivers to make informed decisions and plan for the affected person’s present and future.
RCs are asked to:
- Write, telephone or meet in-person newly referred families
- Maintain a network of existing families in their areas and match families by area and/or similarities
- Maintain confidentiality
- Refer families to known community resources
- Send sympathy cards to families in their states whose children pass away
- Host or support regional gatherings