The Medical Advisory Council
In order to provide guidance to the medical community internationally, the LDSF and LDSF-Canada have worked to create a joint Medical Advisory Council (MAC). The objective of this Council is to provide guidance to the Foundations in order to further our common mission of encouraging education about LDS and related connective tissue disorders, fostering research and providing support for patients, parents and families impacted by Loeys-Dietz syndrome (LDS).
Since LDS is a multisystem disorder, our objective was to create a MAC with medical representation from the various subspecialties coupled with relevant connective tissue expertise. In addition, we are building one MAC that will have international scope and reach.
The members of our MAC include:
Dr. Hal Dietz, Chair
Genetics/Cardiology
Johns Hopkins University, USA
Dr. Eloisa Arbustini
Genetics/Cardiology
University of Pavia, Italy
Dr. James Black
Vascular Surgery
Johns Hopkins University, USA
Dr. Sarah Bowdin
Genetics
Sick Kids, Canada
Dr. Ismail El-Hamamsy
Cardiovascular Surgery
Montreal Heart Institute, Canada
Dr. Pamela Frischmeyer-Guerrerio
Pediatric Allergy & Immunology
Johns Hopkins University, USA
Dr. Anthony Guerrerio
Pediatric Gastroenterology
Johns Hopkins University, USA
Dr. Bart Loeys
Genetics
University of Antwerp, Belgium
Dr. Hiroko Morisaki
Genetics
National Cerebral & Cardiovascular Center Research Institute, Japan
Dr. Takayuki Morisaki
Cardiology
National Cerebral & Cardiovascular Center Research Institute, Japan
Dr. Paul Sponseller
Pediatric Orthopedics
Johns Hopkins University, USA
Responsibilities of MAC members to the Foundations include:
- Support and advance our mission
- Create and provide ongoing review of medical guidelines for LDS
- Review medical resources created by the Foundations
- Help review Foundation-initiated research projects
- Support each Foundation with respect to potential research grant applications
- Mentor and foster interest in future generations of medical professionals/researchers in LDS
Responsibilities of the Foundations to the MAC include:
- Support appropriate research initiatives through patient recruitment, letters-of-support, etc.
- Provide education, support and research strategies in a transparent format
- Provide timely responses to the MAC’s requests and needs
Last Updated February 1, 2020
