| Educational Conferences Our next CCHS Family Conference will be in San Diego, California in June, 2011! |
|
| The CCHS Family Network has organized and raised funds for four conferences since 1990: In Michigan (1993), Captiva Island, Florida (1995) and Nashville, Tennessee (1998). A fourth and fifth CCHS Family Conference was held in Orlando (2003, 2008). We are currently fund–raising for our next conferences — to be held in June 2011 in San Diego, California, USA. At these conferences, families have a chance to meet and share experiences, and the children and young adults can meet, play and socialize, building life–long friendships with each other. At our Orlando conference,the CCHS teens were inseparable and "hung out" until late night! They generated the idea for our kids and teen chat. At the 2008 conference, their panel discussion on their lives and experiences rated among the top events! | At the 1998 Nashville
conference, the older CCHS children talked together and with a
developmental psychologist about how they cope and deal with a
breathing disorder as they aspire to a “normal” teen
life! Ten years later, 2008, we had a “Sibshop” facilitator discuss issues with groups of CCHS siblings. These are all examples of conference events.
CCHS physicians and researchers have also joined in each conference, presenting talks and joining Question and Answer Sessions on a broad range of issues raised by parents and families. The CCHS conferences have generated active support for new research, as well as new momentum for finding treatment options and facilitating transitions to non-invasive ventilation modalities. We would ask you to consider donating time or monies to our educational efforts! |
|
Welcome Centre de Undine Syndrom — Selbsthilfegruppe |
|
Dr. Berry-Kravis’ PowerPoint Presentation from the June’08 Conference is available on the Literature page. |