| This conference is being organized by the following: Yu Yamaguchi, M.D., Ph.D., Professor Investigator, Sanford Children's Health Research Center Burnham Institute for Medical Research, La Jolla, CA Scott H. Kozin, M.D., Associate Professor Orthopaedic Surgery, Temple University, Hand & Upper Extremity Surgeon, Shriners Hospital for Children, Philadelphia, PA Sarah Ziegler, Vice President, National Director of Research, MHE Research Foundation October 29-November 1, 2009 to be held in Boston Speakers list Abstracts will be posted closer to the conference date |
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Clinical manifestation / Orthopedics
Charles T. Price, M.D.
Arnold Palmer Hospital for Children, Orlando FL
Former President of POSNA
John P. Dormans, M.D.
The Children's Hospital of Philadelphia, PA
President Elect of POSNA
Scott H. Kozin, M.D.(Co-organizer)
Shriners Hospital for Children, Philadelphia, PA
President of American Association for Hand Surgery
Human genetics
Wim Wuyts, Ph.D.
Medical Genetics University Antwerp, Belgium
Luca Sangiorgi, M.D., Ph.D.
Rizzoli Orthopaedic Institute, Italy
Christine Alvarez, M.D.
University of British Columbia, Canada
Dan Wells, Ph.D.
University of Houston, TX
Developmental biology of bone and cartilage I
Andrew McMahon, Ph.D.
Harvard Medical School, Boston
David Ornitz, M.D., Ph.D.
Washington University School of Medicine, St.
Louis, MO
Henry M. Kronenberg, M.D, Ph.D.
Harvard Medical School, Boston
Former President of ASBMR
Developmental biology of bone and cartilage II
Andrea Vortkamp, Ph.D.
University Duisburg, Germany
T. Michael Underhill, Ph.D.
University of British Columbia, Canada
Maurizio Pacifici, Ph.D.
Thomas Jefferson University College of Medicine,
Philadelphia, PA
Charles T. Price, M.D.
Arnold Palmer Hospital for Children, Orlando FL
Former President of POSNA
John P. Dormans, M.D.
The Children's Hospital of Philadelphia, PA
President Elect of POSNA
Scott H. Kozin, M.D.(Co-organizer)
Shriners Hospital for Children, Philadelphia, PA
President of American Association for Hand Surgery
Human genetics
Wim Wuyts, Ph.D.
Medical Genetics University Antwerp, Belgium
Luca Sangiorgi, M.D., Ph.D.
Rizzoli Orthopaedic Institute, Italy
Christine Alvarez, M.D.
University of British Columbia, Canada
Dan Wells, Ph.D.
University of Houston, TX
Developmental biology of bone and cartilage I
Andrew McMahon, Ph.D.
Harvard Medical School, Boston
David Ornitz, M.D., Ph.D.
Washington University School of Medicine, St.
Louis, MO
Henry M. Kronenberg, M.D, Ph.D.
Harvard Medical School, Boston
Former President of ASBMR
Developmental biology of bone and cartilage II
Andrea Vortkamp, Ph.D.
University Duisburg, Germany
T. Michael Underhill, Ph.D.
University of British Columbia, Canada
Maurizio Pacifici, Ph.D.
Thomas Jefferson University College of Medicine,
Philadelphia, PA
Biochemistry, enzymology, and chemistry
of heparan sulfate
Marion Kusche-Gullberg, Ph.D.
University of Bergen, Norway
Robert Linhardt, Ph.D.
Rensselaer Polytechnic Institute School of
Engineering, NY
Jeremy Turnbull, Ph.D.
University of Liverpool, UK
Studies using conditional knockout mouse
models / Non-bone phenotypes
Jeffrey D. Esko, Ph.D.
Glycobiology Research & Training Center UCSD,
CA, Former President of the Society for
Glycobiology
Yu Yamaguchi, M.D., Ph.D. (Co-organizer)
Burnham Institute for Medical Research, La Jolla,
CA, Professor Sanford Children's Health
Research Center within the Institute
Studies using non-mammalian model
animals
Henry H. Roehl, Ph.D.
The University of Sheffield, UK
Rahul Warrior, Ph.D.
University of California, Irvine, CA
Joseph H. Yost, Ph.D.
University of Utah School of Medicine
Eccles Institute of Human Genetics
Related bone diseases
Benjamin Alman, M.D.
The Hospital for Sick Children Toronto, Canada
Pancras CW Hogendoorn, M.D., Ph.D.
Leiden University Medical Center, Netherlands
Frederick Kaplan, M.D.
University of Pennsylvania, PA
of heparan sulfate
Marion Kusche-Gullberg, Ph.D.
University of Bergen, Norway
Robert Linhardt, Ph.D.
Rensselaer Polytechnic Institute School of
Engineering, NY
Jeremy Turnbull, Ph.D.
University of Liverpool, UK
Studies using conditional knockout mouse
models / Non-bone phenotypes
Jeffrey D. Esko, Ph.D.
Glycobiology Research & Training Center UCSD,
CA, Former President of the Society for
Glycobiology
Yu Yamaguchi, M.D., Ph.D. (Co-organizer)
Burnham Institute for Medical Research, La Jolla,
CA, Professor Sanford Children's Health
Research Center within the Institute
Studies using non-mammalian model
animals
Henry H. Roehl, Ph.D.
The University of Sheffield, UK
Rahul Warrior, Ph.D.
University of California, Irvine, CA
Joseph H. Yost, Ph.D.
University of Utah School of Medicine
Eccles Institute of Human Genetics
Related bone diseases
Benjamin Alman, M.D.
The Hospital for Sick Children Toronto, Canada
Pancras CW Hogendoorn, M.D., Ph.D.
Leiden University Medical Center, Netherlands
Frederick Kaplan, M.D.
University of Pennsylvania, PA
If you would like to be emailed more information please Click Here
| Links of Scientific Interest |
| Multiple Hereditary Exostoses: Insights Into Pathogensis Conference was held November 3–5, 2005 For complete information concerning this conference Click Here |
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2005 Conference Sponsored By:
The National Institute of Health
The Shriners Hospitals
American Association of Enchondroma Diseases
March of Dimes Birth Defects Foundation
The Orthopaedic Research Society
Gene Dx DNA Dianostic Services
The Mizutani Foundation for Glycosciences
The National Institute of Health
The Shriners Hospitals
American Association of Enchondroma Diseases
March of Dimes Birth Defects Foundation
The Orthopaedic Research Society
Gene Dx DNA Dianostic Services
The Mizutani Foundation for Glycosciences
| The links below the videos are formated in both Flash Media and Windows Media Player. |
What is Multiple Hereditary Exostoses (MHE) / Multiple Osteochondroma (MO)? it is a
debilitating disorder characterized by benign bone tumors, skeletal malformations and an assortment
of variable non-skeletal symptoms that persist throughout life. One of the topics that will be
addressed during the next conference will be the use of the terms used to describe MHE / MO / HME.
Multiple Hereditary Exostoses / Multiple Osteochondroma can be debilitating when the exostoses
compress soft tissues, such as surrounding muscles, nerves and blood vessels. In addition, some
MHE / MO / HME patients develop malignant chondrosarcoma.
The only known treatments for MHE / MO / HME are surgical removal of the exostoses, (which often
grow back at the original site) and surgical procedures to correct bone deformities and limb length
discrepancies. Surgery, physical therapy and pain management are currently the only options
available to MHE / MO / HME patients, and their success varies from patient to patient and many
struggle with pain, fatigue and mobility problems throughout their lives.
Composition of Organizing Committee
Yu Yamaguchi, M.D., Ph.D. is Professor at the Burnham Institute for Medical Research, La Jolla, CA,
and is a member of the newly founded Sanford Children's Health Research Center within the
Institute. His main research area is heparan sulfate proteoglycans in the nervous system. His
laboratory created the conditional knockout mouse model for Ext1 to study the role of heparan
sulfate in various cell types and developmental contexts. This mouse model has since been shipped
to more than 20 laboratories around the world, contributing to the advancement of our
understanding of the role of Ext1 and heparan sulfate. Using this model, Dr. Yamaguchi has
demonstrated that disruption of Ext1 leads to a variety of developmental defects in the nervous
system. Dr. Yamaguchi's current research is aimed at defining the role of heparan sulfate in synaptic
function and behavior using the mouse model, which will shed light on enigmatic neurological and
mental symptoms seen in MHE patients.
Scott H. Kozin, M.D. is a Hand and Upper Extremity Surgeon at the Shriners Hospital for Children in
Philadelphia and Associate Professor at the Department of Orthopaedic Surgery, Temple University
School of Medicine. He is currently President of the American Association for Hand Surgery
and a member of the editorial board of the Journal of Hand. Dr. Kozin is an internationally recognized
surgeon in the fields of limb lengthening, surgical reconstruction, and arthroscopic surgery for
brachial plexus palsy, and has published 78 papers in his fields of expertise. While he is involved in
MHE research primarily as an orthopedic surgeon, seeing 12-15 MHE patients a week, he has strong
interest in basic genetics and bone biology and linking the clinical and research communities together.
Sarah Ziegler and the MHE Research Foundation
The MHE Research Foundation is the internationally recognized organization, which provides support,
clinical information, physician directories to MHE families throughout the world. In addition to acting
as a family support organization, the major mission of the Foundation is to facilitate interactions
between scientists of different research disciplines. The MHE Research Foundation publishes a
electronic newsletter and has developed numerous clinical information guides and supporting video
presentations available on this web site. The Foundation website is linked to many scientific and
medical organizations and is listed as the patient support link on the US Government Genetics Home
Reference (http://ghr.nlm.nih.gov/) website. Ms. Ziegler, is the Vice President, National Director of
Research and the Executive Director of the National MHE Research Registry, Coordinator of Clinical
Information for the Foundation and has been a driving force in developing a growing network of MHE
researchers and clinicians. Under the auspices of the National MHE Research Registry, Ms. Ziegler
serves as Liaison Officer for University of Antwerp and the Rizzoli Orthopaedic Institute, Bologna,
Italy, assisting EuroBoNet researchers with making the connections necessary to obtain the Human
subjects approval needed for samples of exostoses and other reagents to be sent to EuroBoNet
researchers that are currently being studied in several laboratories.
The objectives of this conference, are to again establish and bring together the research and
clinical communities devoted to the better understanding of MHE / MO / HME and those caring for
Hereditary Multiple Exostoses patients. In the hope that the research and education being done
today will bring a better quality of life to all who are affected by this condition. This will be
accomplished by bringing together basic researchers from various disciplines, orthopaedic physicians,
medical geneticists, MHE / MO / HME advocacy leaders and families.
The meeting facilitates discussions and collaborations both among and between all groups,
accelerating the integration of current knowledge and identifying new areas with future research
potential. The conference plan and the selected meeting site were both designed to encourage
dissemination and discussions of new ideas and the establishment of new collaborations between
laboratories.
Understanding of MHE / MO / HME is just at the point where we can begin to make major inroads
toward better diagnosis, treatment, and possible cure. While the last few years have brought real
gains in our understanding, many issues remain unanswered. What signaling pathway is
compromised at the growth plate when heparan sulfate synthesis is reduced? Why does complete
loss of EXT1 or EXT2 function produce overt malignancy? Are there ways to restore heparan sulfate
levels to normal values and repress the growth of the benign tumors? Might the malignant disease
be ameliorated by restoring heparan sulfate synthesis in transformed cells? What can this disease
tell us about the fundamental mechanisms of bone growth and remodeling?
Timing of this conference to the scientific and medical communities
There are no other meetings that focus on the EXT genes, MHE / MO / HME and so this meeting has
a critical role as a forum for dialogue and exchange and will help shape future research in this area.
Our goal in planning this meeting is to bring together researchers with active interests in the
functions of the EXT proteins and to highlight and integrate recent progress in the rapidly growing
area. This special focused meeting distinguishes this conference from all other meetings in the areas
of heparan sulfate, signaling and the extracellular matrix human genetics and Orthopaedics. Holding
a substantial, focused meeting creates new opportunities for cross-fertilization and collaboration, to
ensure the highest research quality takes place, encourages future research and determines the
most appropriate goals for translational studies. This is important for all who are active in this
research area. This meeting will be very useful to clinicians in enhancing communication between
basic researchers and clinicians and improving patient care and quality of live for MHE / MO / HME
patients. Our Foundation knows the up coming conference being held in 2009 comes at a critical time
in MHE / MO / HME Research.
Relevant Previous Meetings
In October 2002, the first conference on Hereditary Multiple Exostoses was organized by Dr. Jeffrey
Esko and Dr. Scott Selleck, and was held at the Arizona Cancer Center in Tucson, Arizona. The first
MHE Conference, idea came about from Sarah Ziegler’s conversations with many researchers
concerning a desire to meet with other researchers from many different disciplines as well as
clinicians, to gather together to share ideas and information. The second MHE Conference was held
in November of 2005 and was co-organized by Dr. Dan Wells, Dr. Jacqueline Hecht and Ms. Ziegler,
more progress was made including a number of new scientific collaborations.
debilitating disorder characterized by benign bone tumors, skeletal malformations and an assortment
of variable non-skeletal symptoms that persist throughout life. One of the topics that will be
addressed during the next conference will be the use of the terms used to describe MHE / MO / HME.
Multiple Hereditary Exostoses / Multiple Osteochondroma can be debilitating when the exostoses
compress soft tissues, such as surrounding muscles, nerves and blood vessels. In addition, some
MHE / MO / HME patients develop malignant chondrosarcoma.
The only known treatments for MHE / MO / HME are surgical removal of the exostoses, (which often
grow back at the original site) and surgical procedures to correct bone deformities and limb length
discrepancies. Surgery, physical therapy and pain management are currently the only options
available to MHE / MO / HME patients, and their success varies from patient to patient and many
struggle with pain, fatigue and mobility problems throughout their lives.
Composition of Organizing Committee
Yu Yamaguchi, M.D., Ph.D. is Professor at the Burnham Institute for Medical Research, La Jolla, CA,
and is a member of the newly founded Sanford Children's Health Research Center within the
Institute. His main research area is heparan sulfate proteoglycans in the nervous system. His
laboratory created the conditional knockout mouse model for Ext1 to study the role of heparan
sulfate in various cell types and developmental contexts. This mouse model has since been shipped
to more than 20 laboratories around the world, contributing to the advancement of our
understanding of the role of Ext1 and heparan sulfate. Using this model, Dr. Yamaguchi has
demonstrated that disruption of Ext1 leads to a variety of developmental defects in the nervous
system. Dr. Yamaguchi's current research is aimed at defining the role of heparan sulfate in synaptic
function and behavior using the mouse model, which will shed light on enigmatic neurological and
mental symptoms seen in MHE patients.
Scott H. Kozin, M.D. is a Hand and Upper Extremity Surgeon at the Shriners Hospital for Children in
Philadelphia and Associate Professor at the Department of Orthopaedic Surgery, Temple University
School of Medicine. He is currently President of the American Association for Hand Surgery
and a member of the editorial board of the Journal of Hand. Dr. Kozin is an internationally recognized
surgeon in the fields of limb lengthening, surgical reconstruction, and arthroscopic surgery for
brachial plexus palsy, and has published 78 papers in his fields of expertise. While he is involved in
MHE research primarily as an orthopedic surgeon, seeing 12-15 MHE patients a week, he has strong
interest in basic genetics and bone biology and linking the clinical and research communities together.
Sarah Ziegler and the MHE Research Foundation
The MHE Research Foundation is the internationally recognized organization, which provides support,
clinical information, physician directories to MHE families throughout the world. In addition to acting
as a family support organization, the major mission of the Foundation is to facilitate interactions
between scientists of different research disciplines. The MHE Research Foundation publishes a
electronic newsletter and has developed numerous clinical information guides and supporting video
presentations available on this web site. The Foundation website is linked to many scientific and
medical organizations and is listed as the patient support link on the US Government Genetics Home
Reference (http://ghr.nlm.nih.gov/) website. Ms. Ziegler, is the Vice President, National Director of
Research and the Executive Director of the National MHE Research Registry, Coordinator of Clinical
Information for the Foundation and has been a driving force in developing a growing network of MHE
researchers and clinicians. Under the auspices of the National MHE Research Registry, Ms. Ziegler
serves as Liaison Officer for University of Antwerp and the Rizzoli Orthopaedic Institute, Bologna,
Italy, assisting EuroBoNet researchers with making the connections necessary to obtain the Human
subjects approval needed for samples of exostoses and other reagents to be sent to EuroBoNet
researchers that are currently being studied in several laboratories.
The objectives of this conference, are to again establish and bring together the research and
clinical communities devoted to the better understanding of MHE / MO / HME and those caring for
Hereditary Multiple Exostoses patients. In the hope that the research and education being done
today will bring a better quality of life to all who are affected by this condition. This will be
accomplished by bringing together basic researchers from various disciplines, orthopaedic physicians,
medical geneticists, MHE / MO / HME advocacy leaders and families.
The meeting facilitates discussions and collaborations both among and between all groups,
accelerating the integration of current knowledge and identifying new areas with future research
potential. The conference plan and the selected meeting site were both designed to encourage
dissemination and discussions of new ideas and the establishment of new collaborations between
laboratories.
Understanding of MHE / MO / HME is just at the point where we can begin to make major inroads
toward better diagnosis, treatment, and possible cure. While the last few years have brought real
gains in our understanding, many issues remain unanswered. What signaling pathway is
compromised at the growth plate when heparan sulfate synthesis is reduced? Why does complete
loss of EXT1 or EXT2 function produce overt malignancy? Are there ways to restore heparan sulfate
levels to normal values and repress the growth of the benign tumors? Might the malignant disease
be ameliorated by restoring heparan sulfate synthesis in transformed cells? What can this disease
tell us about the fundamental mechanisms of bone growth and remodeling?
Timing of this conference to the scientific and medical communities
There are no other meetings that focus on the EXT genes, MHE / MO / HME and so this meeting has
a critical role as a forum for dialogue and exchange and will help shape future research in this area.
Our goal in planning this meeting is to bring together researchers with active interests in the
functions of the EXT proteins and to highlight and integrate recent progress in the rapidly growing
area. This special focused meeting distinguishes this conference from all other meetings in the areas
of heparan sulfate, signaling and the extracellular matrix human genetics and Orthopaedics. Holding
a substantial, focused meeting creates new opportunities for cross-fertilization and collaboration, to
ensure the highest research quality takes place, encourages future research and determines the
most appropriate goals for translational studies. This is important for all who are active in this
research area. This meeting will be very useful to clinicians in enhancing communication between
basic researchers and clinicians and improving patient care and quality of live for MHE / MO / HME
patients. Our Foundation knows the up coming conference being held in 2009 comes at a critical time
in MHE / MO / HME Research.
Relevant Previous Meetings
In October 2002, the first conference on Hereditary Multiple Exostoses was organized by Dr. Jeffrey
Esko and Dr. Scott Selleck, and was held at the Arizona Cancer Center in Tucson, Arizona. The first
MHE Conference, idea came about from Sarah Ziegler’s conversations with many researchers
concerning a desire to meet with other researchers from many different disciplines as well as
clinicians, to gather together to share ideas and information. The second MHE Conference was held
in November of 2005 and was co-organized by Dr. Dan Wells, Dr. Jacqueline Hecht and Ms. Ziegler,
more progress was made including a number of new scientific collaborations.
This website is regularly reviewed by members of the Scientific and Medical Advisory Board of the MHE Research Foundation.
All online submission forms use (SSL 3.0, RC4 with 128 bit encryption (High); RSA with 1024 bit exchange) Protocol with
Privacy protection. Our goal is to make this website as safe and user friendly as possible.
All online submission forms use (SSL 3.0, RC4 with 128 bit encryption (High); RSA with 1024 bit exchange) Protocol with
Privacy protection. Our goal is to make this website as safe and user friendly as possible.
The MHE Research Foundation, we comply with the HONcode standard for health trust worthy information:
By the Health On the Net Foundation. Click here to verify.# HON Conduct 282463 and is linked on the NIH
National Library of Medicine, Directory of Health Organizations (SIS) website, as well as the link for Patient
Information on The Diseases Database a cross-referenced index of human disease, and the Intute: health & life
sciences a free online service providing access to the very best Web resources for education and research
located in the UK. The MHE Research Foundation is proud to be an affiliate of the Society For Glycobiology
By the Health On the Net Foundation. Click here to verify.# HON Conduct 282463 and is linked on the NIH
National Library of Medicine, Directory of Health Organizations (SIS) website, as well as the link for Patient
Information on The Diseases Database a cross-referenced index of human disease, and the Intute: health & life
sciences a free online service providing access to the very best Web resources for education and research
located in the UK. The MHE Research Foundation is proud to be an affiliate of the Society For Glycobiology
The MHE Research Foundation is proud to be working with the EuroBoNeT consortium, a European Commission
granted Network of Excellence for studying the pathology and genetics of bone tumors.
granted Network of Excellence for studying the pathology and genetics of bone tumors.
The MHE Research Foundation is a participating member organization of the United States Bone
and Joint Decade, NFP (USBJD)
and Joint Decade, NFP (USBJD)
| Email the webmaster: webmaster@mheresearchfoundation.org Materials on this website are protected by copyright Copyright © 2008 The MHE Research Foundation |
This web page was updated last on 10/17/08, 4:0O pm Eastern time
Written consent must be obtained to attach web pages or the files attached to this website. Please email webmaster.
Disclaimer: While many find the information useful, it is in no way a substitute for professional medical care.
The information provided here is for educational and informational purposes only. This website does not engage in the practice
of medicine. In all cases we recommend that you consult your own physician regarding any course of treatment or medicine.
The information provided here is for educational and informational purposes only. This website does not engage in the practice
of medicine. In all cases we recommend that you consult your own physician regarding any course of treatment or medicine.
| The MHE Research Foundation video player above these videos are formated in Flash Media. Click the icon > to start viewing the video. Click the icon >> to view the next video or use the play list. Depending on your web browser and Internet connection speed, it may take a few minutes to load. If the video seems a little slow please use the individual links below. Internet Explorer users the links below for windows media player may load faster. Our Foundation has put the videos into multiple formats to make it easier for all of our users to view not matter what Internet connection or computer you are using MAC or PC. |
The MHE Research Foundation would like to thank the March of Dimes Foundation for its support
enabling our foundation to provide the Clinical Video as well as support of the 2005 conference.
enabling our foundation to provide the Clinical Video as well as support of the 2005 conference.
| Third International MHE / MO / HME Research Conference |
December 7-10, 2008
| November 12-15, 2008 |
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