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.   

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.

Relevant Previous Meetings
October 2002, the first conference on Hereditary Multiple Exostoses was organized by Dr. Jeffrey Esko and Dr. Scott
Selleck, Ms. Ziegler and was held at the Arizona Cancer Center in Tucson, Arizona.  The first MHE Conference, idea came about
from Sarah Ziegler’s initiative, 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.
2nd International MHE Conference  was organized by Dr. Dan Wells, Dr. Jacqueline Hecht and Sarah Ziegler in 2005
3rd International MHE Research Conference was organized by Dr. Yu Yanaguchi and Sarah Ziegler in 2009
4th International MHE Research Conference was organized by Maurizio Pacifici, Ph.D. and Sarah Ziegler in 2012
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Fifth International MHE Research Conference
Will be held in West Palm Beach @ the Paley Advanced Lengthening Institute on the grounds of
St. Mary's Medical Center
Thursday afternoon May 19 - Sunday May 22, 2016
Conference organized by
Jeffrey D. Esko, Ph.D.
Distinguished Professor, Department of Cellular and Molecular Medicine Co-Director, Glycobiology Research and Training Center School of Medicine,
University of California, San Diego

Dror Paley, MD, FRCSC
Director  of the Paley Advanced Limb Lengthening Institute and President Elect of the International Limb Lengthening and Reconstruction Society
Sarah Ziegler
Vice President and National Director of Research MHE Research Foundation












































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Wings of HOPE as we REACH
for the CURE to
Multiple Hereditary Exostoses Syndrome / Multiple
Osteochondroma Syndrome
This conference is sponsored by
MHE Patient and families sessions Sunday May 22, 2016 Free registration:  Please complete the
registration form below

A lay over view of the scientific sessions will be presented by Jeff Esko for MHE Families followed by
orthopaedic presentations. They will cover the best treatment strategies for the forearms, humerus,
hips, femur, knees, tibia/fibula, ankles, limb lengthening and bone deformity corrections.

Sunday later in the afternoon doctors Dr. Dror Paley, Dr. David Feldman, Dr. Craig Robbins and Dr.
Kevin Jones will review x-rays and speak with each family in the private setting of the Paley Institute
treatment rooms.

MHE families wanting to participate will need send x-rays on CD to the Paley Institute and must be
received no later than May 13, 2016. The x-rays will be uploaded into the Paley Institute radiology
system. Please send the x-ray CDs to the attention of: Sarah Ziegler MHE conference 901 45th St.
Kimmel Building, West Palm Beach, Florida, 33407

Continental breakfast and lunch will be served.
Free child care is being offered Sunday May 22, 2016
We have arranged a discounted hotel conference room block rate from May 19-22, 2016.
Hyatt Place, West Palm Beach
Reservations must be made by phone mention MHE Conference or use Group Code G-MHEC for
discounted rate. Early bird rate good through April 20, 2016. 888-492-8847
HYATT PLACE WEST PALM BEACH/DOWNTOWN
295 Lakeview Avenue,  West Palm Beach, Florida, USA,  33401

All rooms are suites:
Single King bed: $129.00 per night + tax
Double Queen bed: $139.00 per night + tax

HYATT PLACE is located in the heart of City Place, West Palm Beach, so you can enjoy Downtown.
Palm Beach International Airport (PBI) located 10 minutes (3.4miles) HYATT PLACE and cab fare should
cost no more than $20.00 Uber is cheaper
Fort Lauderdale-Hollywood International Airport (FLL) is located 50.5 miles from the HYATT PLACE hotel
(car rental is your best bet)

All days of the conference shuttle bus will run twice a daily, once in the morning and once in the
evening to and from the HYATT PLACE hotel to the Paley Institute at no charge.
The Paley Institute is located 4.2mi from the HYATT PLACE hotel
Yes
I would like to attend the MHE Patient and family sessions on Sunday May 22, 2016
Name of adult attending:
Name of adult attending:
Number of children attending:
Names and ages of children attending:
I will require child care on Sunday May 22, 2016.
No
Yes
I would like to have my x-rays and or my child/childrens reviewed during
the late afternoon session and speak with one of with surgeons in the
privite
Yes
No
Names and ages of each person
who's x-rays are being requested to
be reviewed by one of the surgeons
Email address:
Home phone number:
Cell Phone number:
Your home address:
Comments:
MHE Patient and familiesThursday afternoon May 19 - through Sunday morning May 22, 2016 scientific
sessions targeted audience is MD, PhDs.  MHE families are welcome to attend at a reduced registration
fee of $75.00 per person (casual business dress required).  Thursday evening following the scientific
session a welcome reception will be held at the Paley Institute, continental breakfast and lunch will be
served. You must be age 18 year of age to attend. Child care will not be offered May 19-21, 2016
Please complete payment and registration form below
MHE Family Registration
I would like to attend the entire MHE Research Conference May 19-22, 2016
Yes
I understand attending by May 19-21, 2016 I will be required to pay a registration fee of $75.00
and must be the age of 18 to attend.
Yes
Name of adult attending:
Name of adult attending:
I understand NO child care is being offered May 19-21, 2016
Yes
Number of children attending:
Names and ages of children attending
Sunday May 22, 2016:
I will require child care on Sunday May 22, 2016.
No
Yes
I would like to have my x-rays and or my child/childrens reviewed during
the late afternoon session and speak with one of with surgeons in  private
Yes
No
Names and ages of each person
who's x-rays are being requested to
be reviewed by one of the surgeons
Email address:
Home phone number:
Cell Phone number:
Your home address:
Comments: