Educational Conferences

The sixth CCHS Family Conference was held in San Diego, California and was a hugely successful endeavor. ***NEW*** Conference wrap up letter summarizing events of the conference. For the families who were unable to attend, there are links to the PowerPoint presentations listed below on our Secure Pages. (Videos will be uploaded shortly.) 

  • DR. MARY VANDERLAAN - WELCOME & INTRODUCTORY REMARKS
  • DR. HARPER (UCLA MEDICAL SCHOOL)- CCHS RESEARCH
  • DR. THOMAS KEENS (LA CHILDRENS’ HOSPITAL) CLINICAL DIMENSION PART 1
  • DR. THOMAS KEENS (LA CHILDRENS’ HOSPITAL) CLINICAL DIMENSION PART 2
  • DR. JAMES C. PERRY (RADY CHILDREN’S HOSPITAL) HEART CONDITIONS & CCHS
  • DR. MAIDA CHEN (CHILDRENS’ HOSPITAL, SEATTLE) ASSOCIATIVE CONDITIONS WITH CCHS
  • DR. DANIEL LESSER (RADY CHILDREN’S HOSPITAL) TECHNOLOGY, NON-INVASIVE VENTILATION
  • IEP PROCESS/OVERVIEW BY HELEN ROBINSON,MVUSD,SEPAC & ROBIN YOUNGWIRTH, CCHS MOM
  • YOUNG CCHS ISSUES - NISHA MORRIS AND ROBIN YOUNGWIRTH, CCHS MOMS
  • PLANNING FOR A HEALTHY FUTURE: TIPS AND RESOURCES - AMBER DENBLEYAKER, SOCIAL WORKER & LEANNE DOWNING, REGIONAL CENTER
  • SURVIVING THE NIGHT? INDEPENDENT LIVING FOR CCHS YOUNG ADULTS - SHEILA KUN, RN,BSN,BA,MS
  • GENETIC QUESTIONS WITH MELINDA RICCITELLI, CCHS MOM AND PROFESSOR OF BIOLOGY AT MIRA COSTA COLLEGE

Consider donating time or monies to our educational efforts!

The CCHS Family Network has organized and raised funds for six conferences since 1990: those were held in Michigan (1993), Captiva Island, Florida (1995), Nashville, Tennessee (1998), the fourth and fifth CCHS Family Conferences were held in Orlando (2003, 2008), and our sixth in San Diego, California (June 2011). 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 2008 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, the CCHS Young Adult 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 ask you to