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1st Annual Melofund Pub Crawl
The 1st Annual Melofund Pub Crawl will be held on June 11, 2011 starting at 2pm. Tickets available now! Click here for more information. For more information please contact Mykel Papke at mykelpapke5@gmail.com.
2nd Annual Melofund Golf Tournament
The 2nd Annual Melofund Charity Golf Tournament + Dinner/Auction will be held on August 20, 2011. Tickets available now! 2011 Golf Tournament home page View our Sponsors For more information please contact Mykel Papke at mykelpapke5@gmail.com.
Most people sit across from their doctors to look for answers, we sit next to ours.
Its Sunday morning November 9th at 8:37am. I have posted some pictures from my wonderful trip to Washington DC a couple of weeks ago for our annual Melo conference. On the left is the White House, in the middle is me standing in front of the Washington National Monument, and on the right are some of my Melo friends. Jen Gordy from Colorado is on the right, her husband is on the left, and Sajjad from Bangladesh is in the middle. Sajjad is one of many people who came a long way in hopes of finding some answers about his rare disease. What he found out is what I already knew, there are no answers. What he did find were doctors that knew how to pronounce the disease and who would love to someday have some answers for us. What he also found for the first time were fellow patients like me. There is something so powerful about finally looking another patient in the eye because without even speaking, you understand each others daily struggle. I go back ...
Pain
It is Thursday night, October 2nd at 7:20pm and I am compelled to write my first blog on my web site (long overdue I know), because today I find myself in an extraordinary amount of pain. I dont know if it is more frustrating that there is no obvious reason for the pain or that there is nothing I can do about it. Those who know me well, know that I very rarely express to anyone that I am hurting. But today, figuring in some way it might help, I told lots of people. I suppose it did help, and everyone that cares about me is so wonderful and sympathetic, but there is no way I can make them understand how it feels. I guess in some way I feel like if I can describe my pain so that they can relate it to something they have felt before, that they would really understand and that might justify me feeling so badly. Everyone feels pain in their life at all different levels. I guess what is so difficult about pain associated with a rare bone disease like mine, with no established cause, cure, or treatment, is that there is a feeling of ...
What is Melorheostosis?
Melorheostosis is a rare, non-hereditary bone disease which affects both sexes. It affects both bone and soft tissue, and while benign, can result in severe functional limitation, extensive pain, and significant deformity. It is usually apparent in early childhood and even in the first few days of life. About 50% of persons affected will develop the symptoms by the time they are 20 years of age. On x-rays, the disease’s sclerotic bone lesions looks like wax dripping down the side of a candle. Hence its name; which is derived from the greek melos “limb” and rhein “to flow”. With an estimated incidence of 0.9 cases per million persons, it can be calculated that there are approximately 1,000,000 to 1,500,000 persons with meloreostosis currently alive. However, only about 300 cases have been reported. Patients with meloreostosis may also have associated cutaneous and soft tissue lesions such as vascular malformations, neurofibromatosis, hemangioma, arterial aneurysms, linear scleroderma, tuberous sclerosis, hemangiomas, and focal subcutaneous fibrosis. Adults generally complain of pain, joint stiffness, and progressive deformity. In children the condition affects mainly the bones of the extremities and pelvis, and may result in limb length inequality, deformity, or joint contractures. Joint contractures may be accompanied by extraosseous bone formation. The ...
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