Preliminary Conference Schedule

Wednesday June 20 – Saturday June 23, 2018; St. Louis, MO

Schedule subject to change. Download the current version here.


Wednesday, June 20, 2018


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


Thursday, June 21, 2018


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


Friday, June 22, 2018


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


Saturday, June 23, 2018


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