Quality of Life Study Update:

Thank you to all who responded to our request for participants for the Quality of Life Study.  Harpreet Chhina , Research Coordinator of the Study, has informed me that they have now reached their target sample size and are unable to accept any more participants.  The response was so overwhelming that she is unable to respond individually to all who emailed.  Dr. Alvarez has been selected to present  an Eposter of the study “The Quality of Life of Patients with Hereditary Exostoses : A Cross Sectional Study of Adult and Pediatric Populations” at the 2010 POSNA (Pediatric Orthopaedic Society of North America) Annual Meeting in May, and the results of the study will be posted on our website when available later this year.

Gathering Update:

We have four Gatherings confirmed for the summer of 2010:

On Saturday, August 7, 2010

The Ninth Annual Northeast MHE Gathering, Pine Island, New York

For information, or if you are interested in attending, please contact Susan at mhenortheastgathering@yahoo.com (or at mheandme.com)

The Third Annual Midwest Gathering, Waterford, Wisconsin

For information, or if you are interested in attending, please contact Kris at mhemidwestgathering@yahoo.com

The Second Annual Southern MHE Gathering, Chesapeake, VA

For information, or if you are interested in attending, please contact Ruth at

mhesoutherngathering@yahoo.com

We are also pleased to announce that there will be a Gathering in Medina, Ohio on

Saturday, August 21.  For information, or if you are interested in attending, please contact Aimee at ohio_mhe_gathering@hotmail.com

Please visit our store at www.cafepress.com/mheandme, for items bearing MHE and Me and Bumpy Bone Club logos designed by Nicole Wynn, our resident artist who is also a third year Graphic Design student living with MHE since her diagnosis at age one.

The MHE Coalition is a 501(c)(3) non-profit organization formed in 2000 to provide support and information to people living with the rare bone disorder, Multiple Hereditary Exostoses ("MHE"), also known as Multiple Osteochondromas ("MO") and Hereditary Multiple Exostoses ("HME").  By funding and participating in research, awarding educational grants to help qualified orthopaedic residents attend the Annual Baltimore Limb Deformity Course, and by working with our members and members of the medical and scientific communities, the MHE Coalition is committed to finding ways to improve the quality of life of those who live with MHE.

MHE is a genetic bone disorder in which benign cartilage-capped tumors (exostoses or osteochondromas) grow from the growth plate of long bones or from the surface of flat bones throughout the body.  While some MHE patients experience minimal or no problems, for others, exostoses 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 chondrosarcoma.  MHE patients have a 50% chance of passing this disorder on to their children.

It is not uncommon for many MHE patients to undergo numerous surgical procedures throughout their lives to remove painful or deforming exostoses, correct limb length discrepancies or improve range of motion.  However, as exostoses can affect the whole body, surgery can only address specific difficulties and surgery, physical therapy and pain management are currently the only options available to most MHE patients. The success of these treatments varies from patient to patient and many struggle with pain, fatigue and mobility problems throughout their lives. 

For more detailed information, please see The ABC's of MHE and other resources available on our website, and for more information and resources for children and families, please visit the website of member organization, MHE and Me at www.mheandme.com.  Please take a moment to visit and sign in to our MHE Worldwide Map, a great way to see where there are people living with MHE all over the world!

The MHE Coalition's programs include:

GATHERINGS: 

These annual gatherings are sponsored by The MHE Coalition to give individuals and families the opportunity to meet others living with MHE and share information and experiences.  Children benefit greatly from having the chance to spend time with their peers and play in an atmosphere of understanding and acceptance.    Please see the update above for more information on the Gatherings scheduled for 2010.

THE BUMPY BONE CLUB:

Over 200 children and teens throughout the world are now members of The Bumpy Bone Club.  Membership kits have been mailed to members throughout the United States and in Australia, Canada, England, Finland, Hungary, India, Ireland, Israel, New Zealand, Norway, Poland, Scotland, Spain and Uruguay.  Whether diagnosed with MHE, or a sibling, cousin, child or good friend of someone with MHE, all children and teens are invited to become members. Membership is free and kits include a personalized membership certificate, special Bumpy Bone Club items, and The Bumpy Bone Club Magazine, written for kids and teens.   Bumpy Bone Club members are encouraged to contribute their stories, poems, photos and artwork to the Magazine, and all members will receive future issues in the mail. To sign up, please email Susan at bumpyboneclub@yahoo.com or mheandme@yahoo.com with your child(ren)'s name(s), age(s), and address and whether the child has MHE or is a sibling, etc.  The MHE Coalition thanks the family and friends of Gerald Feldman for donations made in his memory, which made the Bumpy Bone Club possible.

THE WE CARE PROGRAM:

If your child is having surgery, please notify Susan at mheandme@yahoo.com to arrange for a We Care Package to be sent to the patient, as well as siblings.  Please visit the We Care section of the site for details on participating in this program, either as a recipient or donor.

QUALITY OF LIFE STUDY:

"The health related quality of life in patients with hereditary multiple osteochondromas," is being conducted by Dr. Christine Alvarez, MD, FRCSC, MSc, The University of British Columbia, British Columbia's Children's Hospital.  The MHE Coalition has provided a research grant for this study. Please see the update above for important information regarding the status of this study.

LIMB DEFORMITY COURSE SCHOLARSHIP: 

The Annual Baltimore Limb Deformity Course teaches deformity correction techniques and specialized procedures that can help doctors provide treatment planning and options for MHE patients and others with limb deformities. The Scholarship, established in 2007 by The MHE Coalition, has so far enabled twelve orthopaedic residents the opportunity to attend the Annual Baltimore Limb Deformity Course, Rubin Institute for Advanced Orthopedics, The International Center for Limb Lengthening. (www.deformitycourse.com). 

NEWSLETTERS:

Our Newsletter Section contains an archive of all of our newsletters, which began publication in March of 2000.  Newsletters are available in PDF format. If you are unable to access or print out newsletters and wish to receive print copies, please email either Chele at CheleZ1@yahoo.com or Susan at mheandme@yahoo.com, and request that we mail all future newsletter to you.  Please make sure to include your mailing address in your email.  Put "Newsletter" in the subject line. 

The MHE Coalition is a 501(c)(3) non-profit organization, and donations are tax deductible as allowed by law. Your support is greatly appreciated!

The MHE Coalition wishes to thank David Winegar for designing our new Website and Dimac Software company for donating this Content Management System (CMS). Please visit Dimac's homepage for more information about software and tools for web development.

This page was last updated on March 2, 2010.

Webmaster: Susan Wynn at mheandme@yahoo.com