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Welcome ! to the MHE Research Foundation website The MHE Research Foundation is a nonprofit 501(c)(3) organization dedicated to the support of, Researchers, Physicians and Families, Dealing with (MHE) Multiple Hereditary Exostoses Syndrome/(MO) Multiple Osteochondroma Syndrome a Rare Genetic Bone Disease. The MHE Research Foundations five point mission is to REACH, advance & support the following. |
| RESEARCH, to assist and support researchers in order to one day discover a treatment/cure for MHE/MO/HME. Our foundation works hand in hand with researchers from around the world in this mission. EDUCATION, to provide vital clinical informational guides benefiting both families and physicians. ADVOCACY, bring awareness about this rare neglected bone disease throughout the world. CLINICAL, to help provide resources to families enabling them to locate the medical care they require. HOPE, the research being conducted on MHE/MO/HME & the informational resources will bring a better quality of life to the families affected by this syndrome around the world. Scroll down to read highlights, use the tool bar section tabs above to view complete website information. |
| RESEARCH & THE SANFORD-BURNHAM |
Yu Yamaguchi's research on "MHE" reveals new insights into autism, these findings also provide new insights for
the general autistic population Click here to read the extensive press release
the general autistic population Click here to read the extensive press release
| Journal "The Scientist" Bones to Brains - Autism- Relevant Behavioral Phenotype Click here to read this article PRESS RELEASE RESEARCH & THE SANFORD BURNHAM |
| The MHE Research Foundation Partnering in Advocacy and Education with the Musculoskeletal Tumor Society (MSTS) |
| Dr. Richard Lackman 2011 President of MSTS and long time supporter. Dr. Lackman is Porfessor and Director, Sarcoma Center of Excellence at the Abramson Cancer Center of the University of Pennsylvania |
| Dr. Lor Randal 2011 President of CTOS with Sarah Ziegler and Dr. Kevin Jones.Both are members of the Foundations advisory board. |
| MHE Research was presented by Maurizio Pacifici, Ph.D., Director of Research, Division of Orthopaedic Surgery, The Children’s Hospital of Philadelphia and Sarah Ziegler in panel discussion. To view all video presentations from the 2013 Click Here To view the 2012 Symposium with Dr. Yu Yamaguchi's video presentation and all the others during this symposium Click Here |
| On September 18, 2013 The MHE Research Foundation (Sarah Ziegler, Dr, Yamaguchi, Dr. Pacifici and the Rare Bone Disease Advocacy Alliance member organizations hosted the first-ever Rare Bone Disease Advocacy Day on Capitol Hill in Washington, DC. On this Advocacy Day, advocates from across the nation meet with their elected officials in Congress to explain the real-life impact of rare bone disorders and the need to accelerate the federal government’s commitment to supporting research. Click here to read agenda |
| Our Foundations Vice President and National Director of Research Sarah Ziegler as always attended and he;d our Foundation educational exhibit display at during the annual conference EPOS the 35th Annual Meeting April 17-20, 2016 held in Rome Italy |
| Our Foundations Vice President and National Director of Research Sarah Ziegler as always attended and held our Foundation educational exhibit display at during the annual conference December 9th - 12th, 2015 held in Orlando, FL |
| Our Foundations Vice President and National Director of Research Sarah Ziegler attended and held our Foundation educational exhibit display at during American Academy of Orthopaedic surgeons annual conference March 25- 28, 2015 in Las Vegas, NV |
| Dr. George H. Thompson, POSNA 2003 President, POSNA 2011 President, Dr. James Roach, POSNA 2010 President, John P. Dormans and Sarah Ziegler |
| Dr. Charles T. Price, Distinguished Achievement Award and POSNA 2005 President Sarah Ziegler |
| Dr. James Roach POSNA 2011 President, Sarah Ziegler |
| Dr. Leon Root Dr. John P. Dormans Dr. Richard Davidson Dr. James McCarthy LLRS 2012 Dr. James Roach, Dr. Harold JP van Bosse |
| Dr. Benjamin A. Alman |
Full Day Workshop Summary: To date, nearly 500 unique rare bone diseases have been described, which in the aggregate
affect 1 in 5,000 live births, and comprise 5% of all birth defects. Typically the disability caused by these diseases affects
individuals throughout their lives. Currently, the vast majority of these disorders have no cure, yet studying rare bone diseases
has helped elucidate biological pathways and reveal valuable targets for drug discovery that are benefiting patients with common
bone diseases too.
This workshop, coordinated by the National Bone Health Alliance (NBHA) in partnership with the Rare Bone Disease Patient
Network, MHE Research Foundation and with the support of the American Society for Bone and Mineral Research (ASBMR) and
the United States Bone and Joint Initiative (USBJI) aims to:
1) Convene a multi-disciplinary group of experts including researchers, clinicians, and patients with rare bone diseases to
advance our understanding of skeletal biology and encourage the development of novel therapies to improve outcomes for
individuals with both common and rare bone diseases;
2) Identify gaps in our knowledge regarding the biologic mechanisms underlying rare bone disorders and share effective
research strategies in translational and therapeutic areas;
3) Encourage broad participation both by holding the event the day before the ASBMR 2014 Annual Meeting and providing
funding for a significant number of young investigators to attend; and
4) Disseminate the results broadly by publishing the proceedings of the program in a peer-reviewed journal.
The one-day workshop will include lectures by invited speakers, and multiple opportunities to initiate collaborations and
encourage future research partnerships.
affect 1 in 5,000 live births, and comprise 5% of all birth defects. Typically the disability caused by these diseases affects
individuals throughout their lives. Currently, the vast majority of these disorders have no cure, yet studying rare bone diseases
has helped elucidate biological pathways and reveal valuable targets for drug discovery that are benefiting patients with common
bone diseases too.
This workshop, coordinated by the National Bone Health Alliance (NBHA) in partnership with the Rare Bone Disease Patient
Network, MHE Research Foundation and with the support of the American Society for Bone and Mineral Research (ASBMR) and
the United States Bone and Joint Initiative (USBJI) aims to:
1) Convene a multi-disciplinary group of experts including researchers, clinicians, and patients with rare bone diseases to
advance our understanding of skeletal biology and encourage the development of novel therapies to improve outcomes for
individuals with both common and rare bone diseases;
2) Identify gaps in our knowledge regarding the biologic mechanisms underlying rare bone disorders and share effective
research strategies in translational and therapeutic areas;
3) Encourage broad participation both by holding the event the day before the ASBMR 2014 Annual Meeting and providing
funding for a significant number of young investigators to attend; and
4) Disseminate the results broadly by publishing the proceedings of the program in a peer-reviewed journal.
The one-day workshop will include lectures by invited speakers, and multiple opportunities to initiate collaborations and
encourage future research partnerships.
| Mechanistic and Therapeutic Insights into Skeletal Biology Learned from the Study of Rare Bone Diseases was held on Thursday, September 11,2014 One day prior to the American Society for Bone and Mineral Research (ASBMR 2014 Annual Meeting) George R. Brown Convention Center, 1001 Avenida De Las Americas, Houston, TX |
Sarah Ziegler respresenting
MHE during ASBMR
MHE during ASBMR
| Our Foundations Vice President and National Director of Research Sarah Ziegler as always attended and had our Foundation educational exhibit display at the annual conference Pediatric Orthopaedic Society of North America (POSNA) April 29-May 2, 2015 in Atlanta, GA |
Written consent must be obtained to attach web pages or the files attached to this website, please email the webmaster. Email the webmaster: webmaster@mheresearchfoundation.org Materials on this website are protected by copyright Copyright © 2016 The MHE Research Foundation 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. This web page was updated last on 6/27/16 12:0O pm Eastern time |
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 the patient support link on the US Government Genetics Home Reference (http://ghr.nlm.nih.gov)
website, also linked for Patient Information on The Diseases Database a cross-referenced index of human disease, as well as 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
Click here to verify.# HON Conduct 282463 and is the patient support link on the US Government Genetics Home Reference (http://ghr.nlm.nih.gov)
website, also linked for Patient Information on The Diseases Database a cross-referenced index of human disease, as well as 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
| 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 AES 256 bit encryption (High); RSA 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 is a participating member organization of the United States Bone and Joint Decade/Initiative, (USBJD/I) & the USBJD/I Rare Bone Disease Patient Network |
The MHE Research Foundation is proud to be an affiliate of the Society For Glycobiology
| Our Foundations Vice President and National Director of Research Sarah Ziegler organized The MHE Orthopaedic Symposium as well as our educational exhibit display at during the ILLRS annual conference |
| Our Foundations Vice President and National Director of Research Sarah Ziegler attended the Gordon Research Conference Feb 13-14, 2016 held in Galveston, TX |