"Cracking the Mysteries of Barth Syndrome"

There is much still to be learned about the complexities of Barth syndrome. On July 6 and 7, 2006 at the 3rd International Barth Syndrome Foundation Scientific and Medical Conference, the world’s leading researchers and clinicians will give presentations on many topics that continue to perplex even the most seasoned investigators. Experts in multiple fields (see list below) are designing an innovative, thought-provoking agenda that will address what is now known and explore what is not yet understood. Speakers have been invited, and it promises to be a very stimulating and productive meeting.

The Barth Syndrome Foundation 2006 Scientific and Medical Conference Organizing Committee (COC) invites the submission of abstracts for poster presentations related to any scientific and/or clinical aspects of Barth syndrome. Abstracts will be peer-reviewed by the experts on the COC, and the abstracts that are accepted will be presented as posters at a specific session of the conference.

Details of the submission process are outlined in a Poster Guidelines and Application document. Please go to www.barthsyndrome.org to download this material. The deadline for receipt of completed submissions is Wednesday, March 1, 2006.

Some travel funding will be available, based on need as well as the quality of the poster content. As many as five travel awards, up to $750 each, will be given on a competitive basis. Completion of an additional form is required to apply for this funding, and we particularly encourage young investigators (including doctoral and post-doctoral students) to consider applying for this feature of the program.

Major Agenda Topics:

Functions of the Tafazzin Protein
Miriam L. Greenberg, PhD (organizer)
Professor, Department of Biological Sciences, Wayne State University; Associate Professor of Oncology, Barbara Ann Karmanos Cancer Institute, Wayne State University; Associate Dean, College of Liberal Arts and Sciences, Wayne State University, Detroit, MI
Dr. Greenberg’s well-known research interests focus on genetic control of mitochondrial membrane biogenesis in yeast, in particular. How newly synthesized lipids and proteins are integrated into the membranes of specific organelles is a central question in organelle biogenesis. Dr. Greenberg serves as an advisor on the Scientific and Medical Advisory Board for the Barth Syndrome Foundation.

Michael Schlame, MD (organizer)
Department of Anesthesiology, NYU School of Medicine and Cornell University, New York, NY
Dr. Schlame’s clinical focus consists of pediatric and adult critical care, cardiothoracic anesthesia and pediatric anesthesia. His research interests include mitochondrial energy
metabolism, cardiolipin, pulmonary surfactant, mechanisms of multiple organ failure and cardiomyopathy. Dr. Schlame has been a member of the Scientific and Medical Advisory Board for the Barth Syndrome Foundation since it was created.

Cardiac Aspects of Barth Syndrome
Jeffrey A. Towbin, MD (organizer)
Chief of Pediatric Cardiology; Director, Phoebe Willingham Muzzy Pediatric Molecular Cardiology Laboratory; Professor, Pediatrics, Cardiovascular Sciences and Molecular and Human Genetics, Baylor College of Medicine
Dr. Towbin is a well-known pediatric cardiologist whose major clinical interests include cardiomyopathy, cardiovascular genetics and cardiac transplantation. In addition to his clinical practice, he also conducts research in related areas. Dr. Towbin is a founding member of the Scientific and Medical Advisory Board for the Barth Syndrome Foundation.

Hematological Aspects of Barth Syndrome
Colin G. Steward, BM, BCh, MRCP, FRCPcH, PhD (organizer)
Bristol Royal Hospital for Children, Bristol, UK
Dr. Steward is Reader in Stem Cell Transplantation at the University of Bristol, England and is interested in genetic diseases affecting the blood and bone marrow. He first became interested in Barth syndrome after realizing that his department had missed the correct diagnosis in several children with neutropenia. He has since diagnosed many other families presenting with the disease in South West England and Wales, and has organized the first Barth syndrome clinic in the world and the currently the only specialty clinic in the UK where affected children may be seen. Dr. Steward believes that Barth syndrome is seriously under-diagnosed because it presents in many different ways, and continues to promote awareness about the disorder. Dr. Steward serves as an advisor on the Scientific and Medical Advisory Board for The Barth Syndrome Foundation as well as the Barth Syndrome Trust of the United Kingdom.

Other Clinical and Scientific Issues of Barth Syndrome
Richard I. Kelley, MD, PhD (organizer)
Professor of Pediatrics, Johns Hopkins University School of Medicine, Director, Division of Metabolism, Kennedy Krieger Institute; Baltimore, MD; Staff Physician, The Kennedy Krieger Institute; Director, Intermediary Metabolism and Clinical Mass Spectrometry Laboratory
Dr. Kelley is an expert in metabolic diseases and has been involved in the treatment of more cases of Barth syndrome than any other individual in the US. He hosted the first International Scientific and Family Conference ion Barth Syndrome in June of 2000 at Johns Hopkins’ Kennedy Krieger Institute and has been Chairman of the Barth Syndrome Foundation’s Scientific and Medical Advisory Board since its inception.

Please register for this conference (and have access to reduced hotel room rates) by visiting the Barth Syndrome Foundation website at www.barthsyndrome.org .