Children's Cardiomyopathy Foundation



CCF Connect is an interactive email discussion group that allows members to share information, ask questions and offer emotional support on issues related to pediatric cardiomyopathy. We encourage you to get involved!

Instructions for Posting to CCF Connect

To post to the group, click on the topic you want to respond to and insert your message in the “post reply" box. Or send your email message to

To unsubscribe from the group or request technical assistance, contact Ellen Indoe.

To access the forum and view old posts go to CCF Connect and sign in with your Gmail account.

CCF Connect Guidelines & Etiquette Rules

Messages of general interest related to pediatric cardiomyopathy can be posted to the entire group. In order for this discussion forum to function smoothly, we ask you to kindly follow the below guidelines and etiquette rules: 

  1. When posting, please take into consideration that affected adults, professionals and teens/young adults may be registered as well and will be able to view your posts. Please consider any potential privacy concerns when writing about certain sensitive issues.
  2. Please be mindful that members come from a variety of experience with the disease and all members will be able to view your posts. Some have diagnosed children, some have lost children to the disease, some are trying to cope with a new diagnosis, and some have children that have had a heart transplant.
  3. Please avoid offering individual medical advice since every child's situation is different. It is always best to seek the advice of a physician on any matters related to diagnosis and treatment. 

  4. Experience with different doctors and medical centers can vary due to many circumstances. If you have had a negative experience with a particular doctor or center, please refrain from posting negative comments about the physician or medical center. Details can be shared with other members off the discussion forum by emailing them directly.
  5. Our group is comprised of members from different backgrounds, experiences and religious faiths and it is important to be respectful of other beliefs and opinions. To maintain a welcoming environment, we suggest refraining from discussing topics of a personal nature such as religion or politics.
  6. In order for members to get to know each other, please sign off with your first name, your child's name and his/her diagnosis. An example would be: Joan Smith - Mother to Elizabeth (3 yrs., HCM) and Tyler (11 mo., unaffected)

  7. If you disagree or are upset with a specific member’s comment, it is best to resolve the matter off the discussion forum with CCF’s assistance. 

  8. The discussion forum should not be used for commercial purposes to promote a particular business or establishment that might benefit a member financially.
  9. If you would like to unsubscribe from CCF Connect, please do not send an unsubscribe message to the entire group. You can request assistance by emailing Ellen Indoe.

We hope that you will enjoy using this forum and that it will prove to be a valuable source of information and support!