The CCHS Family Network:
Our Mission Statement |
|
| The CCHS Family Network is a non-profit, tax-exempt
organization registered in the United States. Our efforts focus primarily
on education, inter-family and family-physician communication, and
supporting and facilitating CCHS research, as noted below. We are
grateful for donations, which are tax-deductible in the US, and go
to support our newsletter publication, general outreach, new family
orientation materials, occasional 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 PayPal link, or may be sent directly
to CCHS Treasurers, Trish and Al Pope, 11201 Fairfield, Livonia,
MI 48150.
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 Family Newsletter is an important source of inspiration and support for CCHS patients, as well as for their caregivers and physicians. Our family discussions of health, life and coping issues also yield ideas for new research on this rare disorder. |
Our intent is to share experiences with and provide information about healthcare strategies, new technologies and CCHS research and treatment. Our aim is to inform families about resources and research without prejudice or predisposition toward any particular provider, technology, treatment strategy, research team or medical practitioner. The CCHS Network supports all CCHS research and will cooperate with or facilitate research efforts in a professional manner. Similarly, we expect professionalism and respect for families’ privacy from our physicians and researchers. Families may select to participate in announced research projects. It is a concern of the Network that families not feel pressure to participate in any research. Our primary means of communication include phone links via our Family Directory, our newsletter and the CCHS website. It is Network policy not to share our family or mailing lists, individual family information, or our CCHS Family (phone and email) Directory for any purpose (commercial or medical) without the expressed permission of those families. Educational family conferences will be held every
few years and CCHS physicians and researchers will be Working together with medical practitioners and CCHS families from around the world, we are making great strides toward understanding and optimally treating CCHS. |