Medical Advisory Council (MAC)
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 researchand 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. James Black
Vascular Surgery
Johns Hopkins University, USA
Dr. Ismail El-Hamamsy
Cardiovascular Surgery
Mount Sinai, New York USA
Dr. Pamela Frischmeyer-Guerrerio
Chief, Food Allergy Research Unit
National Institute of Health, USA
Dr. Anthony Guerrerio
Pediatric Gastroenterology
Johns Hopkins University, USA
Dr. Bart Loeys
Genetics
University of Antwerp, Belgium
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