CCHS Families Connect in Several Ways



The CCHS Family Network has organized and funded eight conferences since 1990: Michigan (1993), Captiva Island, FL (1995), Nashville, TN (1998), Orlando FL (2003, 2008, 2014), San Diego, CA (2011), and Orlando (2014).

At these conferences, CCHS families and patients meet and share experiences, building lifelong friendships with each other. The CCHS Network plans group activities and events to foster togetherness throughout the conference. Nursing day care is provided on-site to allow parents to participate in educational presentations, while CCHS children and siblings are cared for.

At the 1998 Nashville conference, the older CCHS children talked about how they cope and deal with a breathing disorder as they aspire toward normal life. At the 2008 conference, the CCHS Young Adult panel discussion on their lives and experiences rated among the top events at the conference. In 2011 a beach barbecue was fun for all. In 2014, CCHS patients went bowling together one evening. Attending a conference is a great way to learn about CCHS and make friends with others in the CCHS community.

Social Media

The CCHS network sponsors a private CCHS Facebook page for families. This is a great resource to share stories about living with CCHS.

The CCHS Foundation has an open Facebook page that anyone can join to follow CCHS.

You can also follow us on Twitter.

Local Meet and Greets

CCHS Network has a group of Regional Coordinators that plan local meet-ups between conference years. Check with your Regional Coordinator to see if a get-together is in the works.