Wednesday June 20 – Saturday June 23, 2018; St. Louis, MO
Schedule subject to change. Download the current version here.
1:00pm – 5:00pm
REGISTRATION
3:00pm – 3:15pm
WELCOME
3:15pm – 4:30pm
PANEL DISCUSSION: “Best Clinical Practices in CCHS”
Moderator: Dr. Maida Chen
Panelists: Dr. Piumelli (Italy); Dr. Samuels (UK); Dr. Sivan (Israel); Dr. Keens, Dr. Trang, Dr. Frerick (Germany)
CCHS experts from the US and International communities discuss CCHS, top care issues, and concerns; and answer patient/family questions.
4:30pm – 4:45pm
BREAK
4:45pm – 5:15pm
Q&A: CCHS Network One World Registry
Discussion period with CCHS Network members
9:00am – 4:00pm
TECH FAIR
9:00am – 9:40am
PRESENTATION: “Molecular Drug Targets in CCHS”
Dr. Isabella Ceccherini M.D., UOC Genetica Medica Istituto Giannina Gaslini
9:40am – 9:50am
BREAK
9:50am – 10:30am
PRESENTATION: “Undoing Ondine: Molecular Biology of Respiratory Drive”
Dr. Douglass Bayliss, Ph.D., University of VA
10:30am – 10:40am
BREAK
Talk and Q/A period with members
10:40am – 11:20am
PRESENTATION: “PHOX2B and the Genes it Controls”
Dr. Diego Fornasari , M.D., Ph.D., University of Milan
11:20am – 11:30am
BREAK
11:30am – 12:00pm
PANEL DISCUSSION
Isabella, Diego, Doug
1:00pm – 5:30pm
RESEARCH FAIR
1:00pm – 2:15pm
POSTER SESSION
2:15pm – 2:30pm
BREAK
2:30pm – 3:10pm
FRENCH PRESENTATION
Dr. Ha Trang, M.D., Hôpital Robert Debré
3:10pm – 3:20pm
BREAK
3:20pm – 5:00pm
SMALL GROUP DISCUSSIONS: “Transitions in CCHS”
Moderator: Sheila Kun, RN, BSN, BA, MS, CPN, FCCP, Nurse Care Manager, Pediatric Pulmonology CHLA
3:20pm – 3:30pm: Introduction
3:30pm – 5:00pm: 30 Minute Repeating Sessions:
• Transition to Non-invasive Ventilation (2 separate talks)
– Pacers
– BiPap
• Starting a Family
• Young Adult Discussion (limited to YA population)
• Going to School
• Fostering Independence
5:00pm – 5:15pm
DAY 2 SUMMARY / WRAP-UP
9:00am – 4:00pm
TECH FAIR
9:00am – 9:40am
PRESENTATION: “Inhibition of HSP90 in Mice: Respiratory Function Recovery”
Dr. Namasivayam Ambalavanan, M.D., University of Alabama at Birmingham
9:40am – 9:50am
BREAK
9:50am – 10:30am
PRESENTATION: “Diaphragm Pacing: Phrenic Nerve Stimulation”
Dr. Cathy Shin, M.D., CHLA
10:30am – 10:40am
BREAK
10:40am – 11:20am
PRESENTATION: “3 Generations of Same PHOX2B Mutation But Different Phenotype”
Dr. Ajay Kasi, M.D., Children’s Healthcare of Atlanta
11:20am – 11:30am
BREAK
11:30am – 12:10pm
PRESENTATION: “Clinical Practice in Israel”
Dr. Yakov Sivan, M.D., Department of Pediatric Pulmonology, CCHS Center, Safra Children’s Hospital, Sheba Medical Center Tel Aviv University, Sackler Faculty of Medicine, Israel
1:10pm – 1:50pm
PRESENTATION: “Clinical Practice in Japan: Diagnosis and Treatments”
Dr. Yosuke Yamada, M.D., Japan
1:50pm – 2:00pm
BREAK
2:00pm – 2:40pm
PRESENTATION: “Neurocognitive Functioning in CCHS Patient”
Dr. Debra Weese-Mayer, M.D., Lurie Children’s Hospital
2:40pm – 2:50pm
BREAK
2:50pm – 3:30pm
CONCURRENT DISCUSSIONS
Attendees may select:
1. Dr. Sabrina Tsao, M.D., Lurie Children’s Hospital (Cardiologist)
2. Dr. Jose Garza, M.D., Children’s Healthcare of Atlanta
3:30pm – 3:40pm
BREAK
3:40pm – 4:40pm
CONCURRENT PANEL DISCUSSIONS
Attendees may select:
1. “Best Practices in CCHS Care Take 2”
Moderator: Dr. Iris Perez, M.D., CHLA
Clinical Panelists: Cardiology, Pulmonology, Endocrinology, Gastro-intestinal, Neurocognitive
2. Research Panel
Moderator: Dr. Eddy Yang, M.D., Ph.D, UAB, Father of CCHS patient
4:40pm – 5:00pm
DAY 3 SUMMARY / WRAP-UP
9:00am – 9:45am
PANEL DISCUSSION: “Loud and Proud: Hear from the Real Experts About CCHS”
CCHS Patient Panel
9:45am – 10:00am
BREAK
10:00am – 11:00am
ROUND TABLE DISCUSSION: “Issues Important to Families”
Moderator: Dr. Thomas Keen, M.D., Children’s Hospital Hospital Los Angeles
Panelists: Researchers, Clinicians, CCHS Experts
11:00am – 11:15am
BREAK
11:15am – 12:15am
WRAP-UP / CONCLUSIONS
