While each family’s experience with pediatric cardiomyopathy is unique, many parents find it beneficial to connect with another parent for information and emotional support. Upon registering, CCF members can request a parent ambassador in their area to contact them.
Role of Ambassador
CCF’s Ambassador Program offers the opportunity for certain parents to be trained in providing resources, guidance, and support to parents with a newly diagnosed child. CCF Ambassadors help to:
- Build a stronger community of cardiomyopathy patients and family members
- Strengthen relationship with top heart centers and medical professionals
- Increase awareness of pediatric cardiomyopathy in their community
Registered parents are eligible to be CCF Ambassadors if they are at least one year post-diagnosis and registered with CCF for at least 4 months. This allows time for the Ambassador to adjust to their child’s diagnosis, learn about the disease, and familiarize themselves with CCF.
Ambassadors can serve in their local community, statewide, or even regionally.
Ambassadors may select the projects they are interested in working on, which may include:
- Reaching out to medical professionals and hospitals
- Providing information and support to affected families
- Leading a grassroots advocacy campaign to support cardiomyopathy-related legislation
- Presenting to schools or community organizations to increase awareness of pediatric cardiomyopathy
- Representing CCF at health fairs and medical conferences
- Working with CCF to develop new patient materials or support services
Ambassadors can determine their level of involvement based on their interests and availability.
In order to be appointed as an ambassador, applicants must submit an interest form, signed confidentiality statement, review the training manual and complete a phone orientation. Contact CCF for details.