If you plan to attend the conference and have not already registered, please complete the registration form on this page.
Click here to download Conference Flyer with Agenda
CMD Family and Affected Person Conference
July 14-15, 2013
The 2013 Cure CMD Family Conference will be held July 14-15 at the National Institutes of Health (NIH) in the Washington D.C. Metro area. The conference will follow the CMD Outcome Study which will be held on Sunday, July 14. This is a great opportunity to for medical professionals and families to discuss updates in treatments, issues facing the CMD community, and bond with other families.
Conference Location
NIH Clinical Research Center, Building 10
Click here to download Conference Map
Travel & Accommodations
Register for the Conference
Conference Agenda
| Sunday, July 14 | ||
| 3:00PM-5:00PM | Registration: Meet and Greet | Conference registrationLocation: Southeast Patio, Building 10 |
| 5:30PM-7:00PM | Welcome Dinner | Location: Southeast Patio |
| 7:15PM-8:30PM | Ice Cream Social20 minute panel discussions | Admission Possible! A panel discussion with CMD college students and grads.Susan Sklaroff-Van Hook, Alex Van Hook, Luke Hoban
Practical Tips: Surveillance and Management1. What is the difference between surveillance and management?2. Low-tech, High-tech: What does all this equipment do? Anne Rutkowski, MD Location: Masur Auditorium |
| Monday, July 15 | ||
| 8:00AM-10:30AM | Breakfast andResearch Updates by Subtype | Breakfast set out in South Lobby of Building 10Collagen VI-RM:Carsten Bonnemann, MD, Katy Meilleur, PhD, RNP, Hemant Sawnani, MD, Yaqun Zou
Location: Masur Auditorium LAMA2-MD: Jim Collins, MD, PhD, Dione Kobayashi, PhD, Olga Igoucheva, PhD, Brigitte Fauroux, MD, PhD Location: Room 3-B1 aDG-MD:Anne Rutkowski, MD, Kristen Zukosky, Sebahattin Cirak, MD, PhD, Sandra Donkervoort, MS, CGC Location: Room 3-B1 LMNA-MD: Naz Dastgir, MD, Susana Quijano Roy, MD, Terry Partridge, PhD Location: Room 4-B1 SEPN1-RM, RYR1-RM and Titin-RM:Alan Beggs, PhD, Lindsay Swanson, MS, CGC, Diana Bharucha, MD, Hank Mayer, MD Location: Room 4-B1 |
| 11:00AM-Noon | Breathing and Orthopedic Management: The Garches Perspective | Introduction: Jackie NelsonPresentation: Susana Quijano-Roy, MDLocation: Masur Auditorium |
| Noon-12:30PM | Panel Discussion:Breathing Management | Moderator: Katy Meilleur, PhD, RNPPanel:
Ann Schrooten, Administrator of Online Forum, “trachesostomy.com” Dr. Hemant Sawnani, MD, Cincinnati Children’s Hospital Medical Center Dr. Hank Mayer, MD, Children’s Hospital of Philadelphia Dr. Susana Quijano Roy, MD, Hospital Raymond Poincare Dr. Brigitte Fauroux, MD, PhD, Armand Trousseau Hospital Location: Masur Auditorium
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| 12:30PM-1:30PM | Lunch | Location: Southeast Patio of Building 10 |
| 1:30PM-2:30PM | Practical Tips:What Do I Need To Know About Nutrition How to Self-Stretch or Stretch Your Child |
Nutrition: Eunice KimTBD: Jennifer Graf Myles, MS, RD LCDR, Clinical Research DietitianStretching: Moderated Discussion: Tina Duong, PT
Location: Masur Auditorium |
| 1:30PM-3:30PM | Poster Session- Coffee/Donuts | Location: Southeast Patio of Building 10 |
| Coping and Life’s Challenges- A Session for First Time Conference Attendees and Newly Diagnosed | Co-moderators: Diane Smith Hoban, Susan Sklaroff- Van HookPanel members: Anne Rutkowski, MD, Jeff SmithLocation: Room 4-B1 | |
| 4:00PM-5:00PM | Hand-on Session #1: Room 3-B1 | Brigitte Fauroux, MD, PhD (Surveillance- How do know something has changed?)Hemant Sawnani, MD (Cough Assist) |
| Hand-on Session #2:Room 4-B1 | Hank Mayer, MD, (Spirometry and Sleep Studies)Susana Quijano-Roy, MD (Hyperinsufflation and IPPB: Alpha Bird 2000) | |
| 5:15PM-5:30PM | Concluding Remarks | Carsten Bonnemann, MDAnne Rutkowski, MDLocation: Southeast Patio of Building 10 |
| 7:00PM-8:30PM | Hang out with the Community | AppetizersLocation: Double Tree Hotel, Wisconsin Blvd. |
Conference Benefactor Form
If you or your family and friends would like to make a contribution to support the 2013 Family Conference, please download and complete this form and return it to Cure CMD at your earliest convenience. You may also contribute by clicking here to visit our Online Contribution page and selecting “Family Conference” under Program Designation.
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