We are respectfully bringing you the latest on the clinical hold for the Palovarotene MO drug trial. We are working diligently with Clementia / Ipsen and are asking for everyone to be patient until further notice.
Patient Safety Is Our First Priority!
Please read the release from Ipsen below for more information
THE MHE RESEARCH FOUNDATION
Be the wings of hope as we reach for the cure for Multiple Hereditary Exostoses (MHE) / Multiple Osteochondroma (MO)
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. Two moms whose paths crossed while desperately seeking answers for their sons, Vincent & Robert, both suffering from MHE, was the beginning of something great! It was then, in 2006, that The MHE Research Foundation was founded by Susan & Craig Eaton and Sarah Ziegler. We have become the #1 site for Research, Education, Advocacy, and Clinical Information in regards to MHE. And most importantly, HOPE.
We are happy to say that all people on the board of directors and all volunteers donate their time and services and there are no salaries paid. All money raised goes directly towards research, conference expenses, and expenses incurred by the foundation to continue on our mission. Thank you for your support!
What is Multiple Hereditary Exostoses?
What is being done?
How can I help?
MHE / HME / MO
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 widely.
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.
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.
Please click here to learn more...
Over the past 18 years ground breaking research has been conducted and as a result, the next stage of research has begun! There are many ongoing initiatives attempting to prevent the condition and discover alternative treatment options.
Researchers at several Universities are working on the development of possible therapeutic treatments for MHE patients. These emerging strategies include those targeting signaling pathways, immune cells, enzyme deficiency and stem cells all of which contribute to exostosis initiation and growth. Singly or in combination, these strategies could one day be used to prevent, stop or reverse tumor growth.
Click here to meet the researchers who are involved with MHE and to learn more about their various initiatives in more detail...
Grants for MHE research have been scarce and much of the research has been severely slowed due to a lack of funding. Many researchers need only $50,000 - $70,000 to continue working on their various targets to prove the concepts in order to secure additional grants.
The MHE Research Foundation is committed to facilitating multiple fund raising activities that will bolster the researcher's efforts in further understanding the disease with the goal of ultimately finding a cure.
Your help is greatly needed and appreciated to help achieve these goals, so please consider a one time donation and getting involved with some of our fundraising activities!
A list of activities can be found here...
Be the wings of hope as we reach for the cure
THE MHE RESEARCH FOUNDATION'S MISSION STATEMENT
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.
Susan Eaton: 917-848-7774
For Clinical Information please contact Sarah Ziegler at 561-315-9149 or