The MHE Coalition Annual Gatherings - 2019
MHE and Me - A Support Group for Kids with Multiple Hereditary Exostoses and their Families
This group was founded in 1999 by two moms who met on the internet while searching for other families affected by MHE. They bonded over their children, who had never met anyone else with MHE and struggled with self-esteem, pain, fatigue and other issues, and decided that kids needed a place to express . In 2000, MHE and Me became one of the organizations that formed the MHE Coalition. Working with Chele Zelina, President of the Coalition, we started searching for people throughout the world. Click on the MHE and Me tab for resources about MHE and children.
What is MHE?
A brief overview:
The We Care Program: Kids with MHE often have surgery. Sometimes just one, but sometimes so many that they lose count! The first surgery is usually a big deal, with lots of presents and cards from family and friends. However, with each additional surgery, an operation seems like no big deal. As parents of kids who have gone through this, we know only too well that every surgery is important to each child and each family. Through the We Care Program, the MHE Coalition provides gift packages for the children undergoing surgery, and to their siblings as well. Receiving a package reminds children that others are thinking of them and lets them know that they are special. The distraction of receiving and opening a package filled with toys, DVDs, books and candy can also help provide relief from pain and boredom.
The child having surgery receives a large gift bag, and each sibling receives a smaller bag. Very large families sometimes receive a family package. The needs of siblings are often overlooked, so it is important to let them know that people understand that things are difficult for them, too. Their needs often take a back seat to the needs of the child needing medical care. Their lives and routines are often disrupted by surgery, and we want them to know they are special, too!
In 2014 we added a new program, Halloween in a Box, providing candy and treats to kids who are unable to trick or treat because of surgery, or pain and fatigue. The response to this was overwhelming, so the Halloween program is now an annual event. In 2016, we began adding some very special items to our packages. Rice socks made and donated by a Brownie Troop in Illinois, and Pain Melters, really cool rice-filled pouches sewn and donated by kids in a junior high school Family and Consumer Science Club from Normal, IL. Both the socks and pain melters are microwavable to become a heat pack or can be put in the freezer to make a cold pack. For kids in pain, this is a favorite item. And then, a wonderful woman in Arizona, Ethel Borland-Robbins, donated some stuffed animals to include in the packages. And, during a fun telephone conversation, the idea of the Bumpy Bone Critter was born. These handmade animals have bumps and scars, and each is made with love, something the kids who get them realize right away. The MHE Coalition provides Ethel with all the materials required to make these adorable critters, and every few weeks we receive boxes filled with new critters, ready to make their way to their new homes.
Click on the We Care tab for information on requesting a package, or on donating items to the program.
Multiple Hereditary Exostoses (“MHE”) , also known as Hereditary Multiple Exostoses (“HME”), or Multiple Osteochondromas (“MO”) 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. These 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 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. Surgery, physical therapy and pain management are currently the only options available to MHE patients, but their success varies from patient to patient. Surgery is not an option for every problem, and many with MHE must struggle with disabling pain, fatigue and mobility problems throughout their lives.
Hi, kids & teens! This is the part of our website that's for you! Come meet other Bumpy Bone Kids and their Super Sibs! We hope lots of you will join in and have your own page on our website. Visit our Bumpy Bone Club Kids Page! If you'd like to be up there, just have your parent or guardian fill out the Photo Release Form and email it to ]email@example.com along with your story and photos. Tell us about yourself - your hobbies, your family, your pets...
We'd also like to know what advice you have for kids who are going to have surgery. What kinds of things have helped you out before and after? We'll be asking your advice on other subjects, too, as we build this section. Let us know ideas you have for things you'd like to see discussed, and things you'd like to see in the Bumpy Bone Club section.
Your support is greatly needed...
bumpy bone blog
J.C. Hannigan is the official blogger for the MHE Coalition. J.C. was one of the original Bumpy Bone Club kids, and her blog posts have had a big impact on those with MHE as she describes what it is really like, living with a rare, misunderstood, and often invisible disease.
J.C. Hannigan is a married mother of two in her mid-twenties and self-proclaimed Chronic Pain Survivor. J.C. is addicted to words, coffee, Instagram selfies, Cadbury Mini Eggs, and Dill Pickle chips (only not together, because that would be gross). She has been blogging for nearly 10 years, and won a Bloggie award some time ago. She writes new adult romance novels and currently has two books published, Collide and Consumed, with many more coming. You can find J.C. pretty much everywhere; except, it would seem…in the laundry room.
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The Tom MacDonell
MHE Scholarship Fund
There is a growing MHE Community on Facebook. Check out our pages
MHE and Me
Bumpy Bone Club
MHE friends and family
The folowing organizations are not part of the MHE Coalition, but we maintain relationships with the international MHE/HME community. Websites for these and other organizations will be posted in our Links section.
MHE and Me Canada
MHE 4 Aussies (Australia)
Norsk MHE-gruppe (Norway)
MHE Sverige (Sweden)
HME Support Group (England)
Exostosis Multiple (Grupo en Espanol) (Spain)
AMEM - Maladie des Exostoses Multiples (France)
Esostosi Multipla Ereditaria (Italy)
Founded in 2000, the MHE Coalition is a 501(c)(3) non-profit dedicated to providing support and information to those living with the rare bone disorder Multiple Hereditary Exostoses. Our organization uses a multi-faceted approach to achieve our goal of helping to improve quality of life for MHE patients and their families. Support includes: development and distribution of information to patients, families, schools and health care providers; assistance in finding qualified doctors and surgeons; our website, which provides information for patients, researchers and physicians; our Facebook groups, which enable people from all over the world to communicate, ask questions, get answers, give and get support and make friends; special programs to help children through this journey, through MHE and Me, the Bumpy Bone Club and We Care; the Annual MHE Coalition Gathering held in New York and now another held in Kentucky; our annual educational grant to provide orthopaedic residents and fellows the opportunity to attend the Annual Baltimore Limb Deformity Course, and participation and funding of research.
The 18th Annual New York Gathering,was held once again at the home of Coalition Vice President, Susan Wynn, in Pine Island, NY on Sunday, July 21, 2019. We were excited to welcome many newcomers in addition so so many old friends. Our setting is casual and informal and includes 3 dogs and 2 guinea pigs, to the delight of the children and many adults in attendance.
July 27, 2019 an MHE Conference & Gathering was held in St. Louis, MO. Details to follow.
And we were very happy to have representatives from Clementia once again at our gatherings to talk to us about the drug trials that have proceeded for MO/MHE/HME. They addressed some of the issues involved in the drug trials, as well as learn from those at the Gatherings what it means to live with MHE.
Please contact Susan or Donna on Facebook or email for more information.
In 2007 the MHE Coalition established an annual educational grant to provide orthopedic residents and fellows the opportunity to attend the Annual Baltimore Limb Deformity Course to learn advanced techniques that will help MHE patients and others suffering from limb deformities. Grant recipients are selected by the course chairs, and we have received letters telling us how helpful the course was in teaching the planning of deformity correction treatments as well as hands-on training in specific procedures. On December 24, 2012, Tom MacDonell, husband of our beloved treasurer, Donna, lost his brave battle against cancer. Tom was one of our first members and one of our biggest supporters, and in his memory we have renamed this program The Tom MacDonell MHE Scholarship Fund. As of 2015 we had provided scholarships to 16 orthopaedic residents, as well as partial scholarships. Donations made in memory of Tom and others have helped to fund this important program.
The 2016 recipient of this scholarship is Matthew Best, MD, of the University of Maryland. Dr. Best sent us the following note:
"Due to the generosity of the MHE Coalition, I am provided with the opportunity to attend the Baltimore Limb Deformity Course this year. As an orthopedic surgeon in training, I am learning new surgical techniques everyday that will benefit my future patients. This course will provide me with knowledge of different limb deformities as well as preoperative planning and advanced surgical techniques for corrective treatments for these patients. A highlight of the course, is the extensive hands-on training we receive from top orthopedic surgeons in the field. My focus during the course will be on pediatric deformity, which provides valuable understanding of the management of patients with MHE. I am grateful to the MHE Coalition for providing me with the opportunity to attend this course and look forward to developing new skills that will allow me to better treat patients throughout my career."
For more information go to
Thank you to Nicole Wynn for designing our logos and contributing her original artwork to our website and our hand-outs. Nicole is a talented graphic designer who just happens to be living with MHE... you can visit her website at nicolewynn.net
DISCLAIMER: While many find the information and experiences that we share helpful, it is in no way a substitute for professional medical care. Our support network 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.