| ||||||||||||||||||||||||||
| Welcome ! The MHE Research Foundation website The MHE Research Foundation is a nonprofit 501(c)(3) organization for the support of researchers, families and physicians dealing with (MHE) Multiple Hereditary Exostoses (MO) Multiple Osteochondroma a rare genetic bone disease. The MHE Research Foundation five point mission is to REACH,advance & support the following. |
| ||||||||||||||||||||
RESEARCH, to help researchers one day find a treatment / cure for MHE. Our foundation works hand
in hand with researchers from around the world on this mission.
EDUCATION, to provide clinical information, guides to help benefit both families and physicians.
ADVOCACY, bring awareness about this disease throughout the world.
CLINICAL, to help provide resources to families enabling them to find the medical care they need.
HOPE, the research being conducted on MHE & the informational resources will bring a better quality
of life to the families affected by this disease.
Scroll down and read more or use the tool bar to find the information you are looking for.
in hand with researchers from around the world on this mission.
EDUCATION, to provide clinical information, guides to help benefit both families and physicians.
ADVOCACY, bring awareness about this disease throughout the world.
CLINICAL, to help provide resources to families enabling them to find the medical care they need.
HOPE, the research being conducted on MHE & the informational resources will bring a better quality
of life to the families affected by this disease.
Scroll down and read more or use the tool bar to find the information you are looking for.
MHE / MO / HME is a genetic bone disorder in which benign cartilage-capped bone tumors grow
outward from the metaphyses of long bones, growth plates or from the surface of flat bones
throughout the body. The severity of this disease varies. Some patients may have as few as two
tumors, but most patients develop many more and the numbers of tumors can run into the
hundreds.
These Exostoses / Osteochondromas can cause numerous problems, including: compression of
peripheral nerves or blood vessels; irritation of tendons and muscles resulting in pain and loss of
motion; skeletal deformity; short stature; limb length discrepancy; chronic pain and fatigue; mobility
issues; early onset arthritis; and an increased risk of developing malignant tumor transformation
(chondro-sarcoma) reported risk of 2%-5% over life time.
It is not uncommon for MHE / MO / HME patients to undergo numerous surgical procedures
throughout their lives to remove painful or deforming Exostoses / Osteochondromas and or to
correct limb length discrepancies and improve range of motion.
Surgery, physical therapy and pain management are currently the only options available to MHE / MO
/ HME patients, but their success varies from patient to patient and many struggle with chronic pain,
fatigue and mobility problems throughout their lives.
MHE / MO / HME is a genetic autosomal dominant hereditary disorder. This means that a patient with
MHE / MO / MHE has a 50% chance of transmitting this disorder to his / her children. Approximately
10% -20% of individuals with MHE / MO / HME have the condition as a result of a spontaneous
mutation are thus the first person in their family to be affected.
outward from the metaphyses of long bones, growth plates or from the surface of flat bones
throughout the body. The severity of this disease varies. Some patients may have as few as two
tumors, but most patients develop many more and the numbers of tumors can run into the
hundreds.
These Exostoses / Osteochondromas can cause numerous problems, including: compression of
peripheral nerves or blood vessels; irritation of tendons and muscles resulting in pain and loss of
motion; skeletal deformity; short stature; limb length discrepancy; chronic pain and fatigue; mobility
issues; early onset arthritis; and an increased risk of developing malignant tumor transformation
(chondro-sarcoma) reported risk of 2%-5% over life time.
It is not uncommon for MHE / MO / HME patients to undergo numerous surgical procedures
throughout their lives to remove painful or deforming Exostoses / Osteochondromas and or to
correct limb length discrepancies and improve range of motion.
Surgery, physical therapy and pain management are currently the only options available to MHE / MO
/ HME patients, but their success varies from patient to patient and many struggle with chronic pain,
fatigue and mobility problems throughout their lives.
MHE / MO / HME is a genetic autosomal dominant hereditary disorder. This means that a patient with
MHE / MO / MHE has a 50% chance of transmitting this disorder to his / her children. Approximately
10% -20% of individuals with MHE / MO / HME have the condition as a result of a spontaneous
mutation are thus the first person in their family to be affected.
| ** New MHE / MO / HME Research Project is now open and needs patient participation.** Research "PATIENT" Registry Click Here for complete details, tumor and blood samples are needed. If you or your child is having surgery please consider donating these tumors samples to research. |
| |||||||
| General donations to our foundation can be made Monthly,Quarterly,Annually as well as one time donations |
All donations made to the MHE Research Foundation are exempt from Federal Income Taxes under
Section 501(c)(3) of the Internal Revenue Code and are greatly appreciated. All donations go to help
this foundation in its efforts to the further understanding of MHE through research and education.
Section 501(c)(3) of the Internal Revenue Code and are greatly appreciated. All donations go to help
this foundation in its efforts to the further understanding of MHE through research and education.
Network for Good, The MHE Research Foundation's trust worthy report, to read please Click Here
Toll Free 1-877-486-1758
Sign the MHE Research Foundations Guest Book
Send us your comments, question & thoughts Click Here
| HIGH IMPORTANCE, Your assistance needed. Please register with the MHE Research Foundation. |
This online registration form has been encrypted with the following, SSL 3.0.RC4 with 128 bit
encryption (High); RSA with 1024 bit exchange (Internet Security). Once you have registered, you
can come back anytime to modify your profile. When you register you will choose a password to log
in.
If you have registered your contact information with us before Dec 5 2007, we are asking that you
register again in this new database. Our foundation is always working on ways to serve the MHE
community better and appreciate your cooperation as we implement this new registration process.
Please be aware that if you would like to participate in any research project that our foundation is an
active part in you will still need to fill out the online Research "PATIENT" Registry Form, as this is
required by Human Subjects Regulations for Research. The research participation process has not
changed, if you have registered in this registry you DO NOT have to register again.
encryption (High); RSA with 1024 bit exchange (Internet Security). Once you have registered, you
can come back anytime to modify your profile. When you register you will choose a password to log
in.
If you have registered your contact information with us before Dec 5 2007, we are asking that you
register again in this new database. Our foundation is always working on ways to serve the MHE
community better and appreciate your cooperation as we implement this new registration process.
Please be aware that if you would like to participate in any research project that our foundation is an
active part in you will still need to fill out the online Research "PATIENT" Registry Form, as this is
required by Human Subjects Regulations for Research. The research participation process has not
changed, if you have registered in this registry you DO NOT have to register again.
| What is Multiple Hereditary Exostoses? Multiple Hereditary Exostoses (MHE) also often referred to as Hereditary Multiple Exostoses (HME) Multiple Osteochondromas (MO) is the preferred term used by the World Health Organization "WHO". |
Pure White Wings All children are born as pure as small white doves with spirits eager to soar. With nurture and care, over time they spread their wings as they grow. With the warm summer breeze, parents take great joy in watching our kids learn to fly. Flying around the clear blue sky with endless amounts of energy. Darting gracefully between cotton cloud dreams as these little doves fly after one another while playing and chasing their dreams. You see our pure white doves were born with the same eager spirit, but also with BROKEN WINGS. Wings that are lame, bumpy and crooked, this hampers their ability to fly. Many times they simply watch through a window as others fly to follow their dreams. They can only imagine the feeling of boundless energies of freedom. Imagining what it would be like to dart at will between cotton cloud dreams, during the warm summer breeze. While their wings maybe broken, their SPIRITS SOAR, giving these kids the unmatched strength, courage and determination to overcome and wisdom far beyond their years. It is their SPIRIT! Gracing them to find other adventures in life and spotting joy that others over look or take for granted. Their energies are saved for times when it's needed for them to be able to overcome the challenges they face day in and day out. Their strength is used to endure the many surgeries and pain they face, trying to repair broken wings. Hoping that this surgery will be their last. The WINGS OF HOPE lead the way as we REACH for the CURE! In order to fix our children’s broken wings once and for all. To put an end to a life time of sitting on the side lines, watching others through the window. So they may also one day truly feel all the scenes of freedom others enjoy. WHO ARE THESE WINGS OF HOPE? YOU ASK !! THEY ARE EVERYONE OF US!!! For you see, we are the care takes of the future, so others may one day be able to fly amongst clear warm blue skies of cotton cloud dreams. Just the way life should be. The MHE / MO / HME RESEARCH being conducted today around the world, will open the WINDOW in the future and allow our children not only to FLY LIKE THE PURE WHITE DOVES THEY ARE, BUT SOAR LIKE EAGLES!!!! The MHE Research Foundation would like to THANK YOU for becoming one of our WINGS OF HOPE!!!! |
This website loads much faster using Fire Fox web browser download link You will also not need to
use the tool bar scroll. People using Internet Explorer: To use the full drop down tool bar you will
need to move your mouse over the tool bar and use the small scroll located on the right hand of this
web page. For more detailed website user information link,
use the tool bar scroll. People using Internet Explorer: To use the full drop down tool bar you will
need to move your mouse over the tool bar and use the small scroll located on the right hand of this
web page. For more detailed website user information link,
The MHERF website has a language translations section, you can find all website pages that have
been encoded for translation into German, Chinese, Japanese, Korean, Arabic, French, Portuguese,
Spanish and Italian languages. Simply Click on the Flag of the country you would like the web-page
translated into.
been encoded for translation into German, Chinese, Japanese, Korean, Arabic, French, Portuguese,
Spanish and Italian languages. Simply Click on the Flag of the country you would like the web-page
translated into.
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
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
| 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 7/23/08, 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 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.
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.
If you are looking for more information in Italian, please also contact the following organization.
A.C.A.R Onlus dedicated to promoting and encouraging research and to provide support and
information to people living with Multiple Hereditary Exostoses and Ollier/Maffucci syndrome.
A.C.A.R Onlus dedicated to promoting and encouraging research and to provide support and
information to people living with Multiple Hereditary Exostoses and Ollier/Maffucci syndrome.
If you are looking for information about Ollier's Disease / Enchondromatosis,
please contact the following organization.
please contact the following organization.
| Make A Donation Via Check |
| Visit our websites Connection Corner MHE Family Support, to view entire section Click Here |
Press Release 5/ 09 /08
We are pleased to announce Yu Yamaguchi, M.D., PH.D. a member of our Scientific and Medical
Advisory Board has been named as one of the three senor investigators at the new Sanford Children’s
Health Research Center located at the Burnham Institute for Medical Research in San Diego CA, where
he will continue his research efforts to read this Press Release Click Here
We are pleased to announce Yu Yamaguchi, M.D., PH.D. a member of our Scientific and Medical
Advisory Board has been named as one of the three senor investigators at the new Sanford Children’s
Health Research Center located at the Burnham Institute for Medical Research in San Diego CA, where
he will continue his research efforts to read this Press Release Click Here
Press Release 5/13 /08
The UnitedHealthcare Children's Foundation is offering support to meet the needs of children across
the United States with assistance grants for medical services not fully covered by health insurance.
To read Click Here
The UnitedHealthcare Children's Foundation is offering support to meet the needs of children across
the United States with assistance grants for medical services not fully covered by health insurance.
To read Click Here
Bone Development, Drosophila, Exostoses Development, EXT Gene Function, Glycobiology, Mice Models,
NON Bone Phenotypes, Zebrafish ModelsThe MHE Research Foundation brochureResearch section Genetics section
Chronic pain sectionOrthopaedics sectionADVOCACY,Board of DirectorsScientific & MedicalAdvisory Board
All AboutThe NationalMHE / MO / HMEResearch Registry(How You Can Participate)MHE / MO / HME Researchers& Physicians
Society RegistrationResource SectionFamily SupportEuroBoNetmmherfcreditcard
MHE Golf Classic AAOS,POSNA, CHOPPediatric Orthopaedic Society of North America
American Academy of Orthopaedic SurgeonsThe Children's Hospital of Philadelphia
http://mheresearchfoundation.org/Wim_Wuyts_Collection_of_exostoses_osteochondroma_for_research_study.htmlmmherfcreditcardosteochondroma
Doctor dirctors MHERF researcher weblisting
DonationEX EXTgene
http://www.mheresearchfoundation.org/MHE_Disease_Database_webpage.html
Fubd raise section
MHE Researh
announcent pagecontact information EXTGeneGuestbook http://mheresearchfoundation.org/Find_Sarcoma_Centers_Directories.htmlNreyearysFuntasia MHERf internatioal
doctor
NON Bone Phenotypes, Zebrafish ModelsThe MHE Research Foundation brochureResearch section Genetics section
Chronic pain sectionOrthopaedics sectionADVOCACY,Board of DirectorsScientific & MedicalAdvisory Board
All AboutThe NationalMHE / MO / HMEResearch Registry(How You Can Participate)MHE / MO / HME Researchers& Physicians
Society RegistrationResource SectionFamily SupportEuroBoNetmmherfcreditcard
MHE Golf Classic AAOS,POSNA, CHOPPediatric Orthopaedic Society of North America
American Academy of Orthopaedic SurgeonsThe Children's Hospital of Philadelphia
http://mheresearchfoundation.org/Wim_Wuyts_Collection_of_exostoses_osteochondroma_for_research_study.htmlmmherfcreditcardosteochondroma
Doctor dirctors MHERF researcher weblisting
DonationEX EXTgene
http://www.mheresearchfoundation.org/MHE_Disease_Database_webpage.html
Fubd raise section
MHE Researh
announcent pagecontact information EXTGeneGuestbook http://mheresearchfoundation.org/Find_Sarcoma_Centers_Directories.htmlNreyearysFuntasia MHERf internatioal
doctor
| THE FUNTASIA RESEARCH BANQUET AND WAS A HUGE SUCCESS! THIS EVENT WAS SIMPLY MAGICAL IN EVERY SENSE OF THE WORD! During this banquet "The Humanitarian Scientific Achievement Award" was presented to Dr. Yu Yamaguchi and the "REACH Research Award" was presented to Dr. Dominique Stickens, along with CITATIONS * PROCLAMATIONS CERTIFICATES OF RECOGNITION being awarded to both by members of the U. S. Congress ~ N. Y. State Senate The Borough of Brooklyn, City of New York. To read more including press release from the Burnham Institute for Medical Research and view the video's of speeches from this very special day Click Here |
Press Release 5/21/08
Genetic Information Nondiscrimination Act (GINA) [H.R. 493, S.358] this act was passed the
House by a vote of 414-1 and the Senate by a vote of 95-0 and was signed into law on May 21,
2008 by President Bush
To read Click Here
Genetic Information Nondiscrimination Act (GINA) [H.R. 493, S.358] this act was passed the
House by a vote of 414-1 and the Senate by a vote of 95-0 and was signed into law on May 21,
2008 by President Bush
To read Click Here
Press Release 5/27/08
5th Annual International Pediatric Orthopaedic Symposium presented by the American Academy of
Orthopaedic Surgeons (AAOS) and Pediatric Orthopaedic Society of North America (POSNA) will be
held Dec 3-7, 2008 in Orlando Florida. During this symposium there will be a workshop held on
Dec 5, 2008 relating to the surgical needs of children with MHE. This session will be moderated by
Dr. Charles T Price an Pediatric Orthopaedic surgeon at the Arnold Palmer Hospital for Children.
Dr. Price serves on the Advisory Board for this symposium and is also a member of our foundation's
Scientific and Medical Advisory Board. Our foundation would like to thank POSNA, & AAOS, Dr. Price
and all the participating Orthopaedic Faculty Dr. Dormans, Dr. Paley, Dr. Alman, Dr. Noonan,
Dr. Gebhardt, Dr. Ippolito, Dr. Dimeglio for all of their efforts. If you are an Orthopaedic Physician
and are interested in registering for this meeting Click Here.
5th Annual International Pediatric Orthopaedic Symposium presented by the American Academy of
Orthopaedic Surgeons (AAOS) and Pediatric Orthopaedic Society of North America (POSNA) will be
held Dec 3-7, 2008 in Orlando Florida. During this symposium there will be a workshop held on
Dec 5, 2008 relating to the surgical needs of children with MHE. This session will be moderated by
Dr. Charles T Price an Pediatric Orthopaedic surgeon at the Arnold Palmer Hospital for Children.
Dr. Price serves on the Advisory Board for this symposium and is also a member of our foundation's
Scientific and Medical Advisory Board. Our foundation would like to thank POSNA, & AAOS, Dr. Price
and all the participating Orthopaedic Faculty Dr. Dormans, Dr. Paley, Dr. Alman, Dr. Noonan,
Dr. Gebhardt, Dr. Ippolito, Dr. Dimeglio for all of their efforts. If you are an Orthopaedic Physician
and are interested in registering for this meeting Click Here.
Website update 6/18/08
The School Needs Resource section of our website has been updated and now includes information
for writing letter for school needs, MHE/MO/HME Clinical Information form PDF, MHE/MO/HME school
needs check list PDF and more Click Here
The School Needs Resource section of our website has been updated and now includes information
for writing letter for school needs, MHE/MO/HME Clinical Information form PDF, MHE/MO/HME school
needs check list PDF and more Click Here
| Make a donation to help support the MHE / MO / HME Surgical Session at the International Pediatric Orthopaedic Symposium |
Donation of $50.00
Donation of $15.00
Donation of $25.00
Donation of $75.00
Donation of $100.00
Donation made in other amount
| Make a donation to help support the Third International MHE / MO / HME Research Conference |
Donation of $50.00
Donation of $15.00
Donation of $25.00
Donation of $75.00
Donation of $100.00
Donation made in other amount
Announcement 6/25/08
The MHE Research Foundation is a recipient of a Google Grant award. To read more Click Here
The MHE Research Foundation is a recipient of a Google Grant award. To read more Click Here
The MHE Research Foundation is a participating member organization of the United States Bone
and Joint Decade, NFP (USBJD)
and Joint Decade, NFP (USBJD)