Who We Are

Our Mission

The CCHS Family Network is a non-profit, tax-exempt organization registered in the United States. Our efforts focus primarily on education and support of our families and CCHS patients, inter-family and family-physician communication, and supporting and facilitating CCHS research.

The purpose of the CCHS Family Network is to assist each other, and especially new CCHS families, in coping with issues that arise in living with a family member who is technology (ventilator) dependent and whose respiratory status must be regularly monitored. We have learned that sharing our CCHS children’s or young adults’ challenges and successes through the CCHS Website, Discussion Board and occasional newsletters is an important source of inspiration and support for CCHS patients and their families. Our family discussions of health and life and coping challenges also yield ideas for new research on this rare disorder.

We work to share patient experiences and to provide information about healthcare strategies, new technologies and CCHS research and treatment. We aim to inform families about resources and research without prejudice or predisposition toward any particular provider, technology, treatment strategy, research team or medical practitioner. Our primary means of communication include the CCHS website and email and phone conversations. We share family contact information with other CCHS families via our CCHS Family Directories, national (US) and international. The Family Contact Directories are found on our secure (password protected) Family Pages. CCHS Patients/Families should register with the Network to access these pages and join in the Discussion Board conversations.

Research

The CCHS Network supports all CCHS research and will cooperate with and facilitate research efforts in a professional manner when researchers seek patients’/families’ assistance or participation. We encourage interested families to participate in announced research. It is Network policy not to share our family directories or mailing lists for any purpose, commercial or medical, without the expressed permission of the CCHS families. Educational family conferences will be held every few years and CCHS physicians and researchers will be invited to present research that is important to patients and families. Working together with medical practitioners and CCHS families from around the world, we are making great strides toward understanding and optimally treating CCHS.

Donations

We are grateful for donations, which are tax-deductible in the US. They go to support our general outreach, new family orientation, family conferences and other activities that directly support our work. The Network pays no salaries and is administrated through the voluntary donations of time and effort of its founder-director and its advisory board. Donations may be made through this site via the Donate link, or may be sent directly to CCHS Treasurers, Trish and Al Pope, 11201 Fairfield, Livonia, MI 48150.