We’re excited to bring you these videos of the 8th Alström Syndrome International Conference in Plymouth, MA!
TWENTY YEARS OF ALSTROM SYNDROME INTERNATIONAL – Photo Montage by Jan Marshall
Conference Activities!
- A VISIT TO AL’S PIZZA: Some of our gang enjoying pizza and hanging out!
- THE A-TEAM MEMBERS TAKE A RIDE ONT THE PILGRIM BELLE: A great time enjoying one another’s company!
- AN ADVENTURE IN THE TREES: Our outing to the Heritage Museum Adventure Park!
- CARABINER’S CLIMBING WALL: Our gang climbing a wall!
- EDAVILLE USA: A great time was had by all!
- PLYMOUTH PLANTATION: A visit in two parts!
- A VISIT TO THE MYSTERY ROOM
- ASI BOARD AND CONFERENCE SPEAKERS ON THE PILGRIM BELLE
- A PIRATE SHIP ADVENTURE!
Conference Symposiums and Talks
- FIBROSIS IN ALSTROM SYNDROME: CLINICAL AND EXPERIMENTAL STUDIES: Vera Bettini, MD, University of Padua, San Bartolomeo Hospital, La Spezia, Italy
- ADIPOCYTE DYSFUNCTION AND ITS CONSEQUENCE IN ALSTRÖM SYNDROME: Tarekegn Hiwot, MD, Queen Elizabeth Hospital, University of Birmingham, Birmingham, UK
- ROUND ONE: STAKEHOLDER ENGAGEMENT:Discuss and identify meaningful elements critical to effective research and progress (Topics Chosen by Stakeholder Steering Committee (SSC) December, 2015)
- ROUND TWO: STAKEHOLDER ENGAGEMENT: Sort and prioritize meaningful elements critical to research and progress.
- THE NIH CILIOPATHY STUDY: Meral Gunay-Aygun, MD, National Human Genome Research Institute, NIH, Bethesda, MD
- HISTORICAL PERSPECTIVE: UNRAVELLING THE MOLECULAR BASIS OF ALSTROM SYNDROME: Gayle B Collin, MS, The Jackson Laboratory, Bar Harbor, ME
- NIH STUDY – CLINICAL AND MOLECULAR INVESTIGATIONS INTO CILIOPATHIES: LIVER DISEASE IN ALSTROM SYNDROME: Meral Gunay-Aygun, MD, National Human Genome Research Institute, NIH, Bethesda, MD
- TRANSPLANT BASICS: WHAT YOU NEED TO KNOW ABOUT KIDNEY TRANSPLATATION: Michelle Josephson, MD, Medical Director Kidney Transplant, University of Chicago, Chicago, IL; Patient Perspectives: Adam Kozarewicz (A-Team) Chicago, IL; David Faircourt (A-Team), Oceano, CA
- ARC: PUT YOURSELF IN THE RESEARCH DRIVING SEAT: Matthew Smith, BS, Health Information Technology Manager, Genetic Alliance; Principal Investigator, Joubert Syndrome Registry, Joubert Syndrome & Related Disorders Foundation (JSRDF)
- TECHNOLOGY FOR LIFE: Marco Gregnanin, CEO, ITEX, Rome, Italy
- DEAFBLINDNESS, THEORY of MIND, COGNITIVE FUNCTIONING and SOCIAL NETWORKS in ALSTRÖM SYNDROME: Hans-Erik Frölander, PhD, The National Agency for Special Needs Education and Schools, Örebro, Sweden
- ASPECTS OF LEARNING IN DEAFBLINDNESS – OPPORTUNITIES AND LIMITATIONS FOR PERSONS WITH ALSTRÖM SYNDROME: Berit Rönnåsen, PhD, Örebro University Hospital, The Swedish Institute for Disability Research, Orebro, Sweden
- EDUCATION PANEL DISCUSSION; Gina Denbow, Chair, Campobello, New Brunswick
- VISION LOSS in ALSTROM SYNDROME: OPTIONS AND HOPES: Alex V. Levin, MD, Wills Eye Hospital, Philadelphia, PA
- FAMILY STUDIES ON HYPERLIPIDEMIA IN ALSTRÖM SYNDROME: Robert Shamburek, MD, National Heart, Lung and Blood Institute, NIH, Bethesda, MD
- OPTIMIZING NUTRITION FOR OPTIMAL HEALTH: Clair Francomano, MD, Director, Harvey Institute of Human Genetics, Greater Baltimore Medical Center, Baltimore, MD
- INTRODUCTION TO GENETICS FOR ALSTROM SYNDROME: Clair Francomano, MD, Director Adult Genetics,, Harvey Institute of Human Genetics, Greater Baltimore Medical Center, Baltimore, MD; Antonie Kline, MD, Director Pediatric Genetics, Harvey Institute of Human Genetics, Greater Baltimore Medical Center, Baltimore, MD
- SHORT COURSE OF ENDOCRINOLOGY & METABOLISM IN ALSTROM SYNDROME: WHAT YOU SHOULD KNOW AND WHAT YOU COULD DO: Pietro Maffei, MD, PhD, University of Padua, Padua, Italy
- WHEN HEARING AIDS ARE NOT ENOUGH: Regina Presley, AuD, Senior Cochlear Implant Audiologist, Greater Baltimore Medical Center, Baltimore, MD
- CARDIAC PHENOTYPES IN ALSTRÖM SYNDROME – OVERVIEW: Cathy Carey, MD, Torbay Hospital, Torquay UK
- PEDIATRIC CARDIOMYOPATHY IN ALSTROM SYNDROME: Andrew Warren, MD, IWK Medical Center, Halifax, NS Canada
- ASK THE A-TEAM: AN UNPARALLELED OPPORTUNITY FOR PARENTS, RESEARCHERS, AND DOCTORS TO SEEK ENLIGHTENMENT. Jamie Seeger, moderator.
- INTRODUCTION to DAY 2: Anne Nordstrom, PhD, Walpole, NH
- PEDIATRIC CARDIOMYOPATHY IN ALSTROM SYNDROME: Andrew Warren, MD, IWK Medical Center, Halifax, NS Canada