Inclusion Body Myositis (IBM)
Inclusion body myositis is a rare, little known muscle disease, with no effective drug treatment.
Cure IBM is dedicated to inclusion body myositis awareness, education, and research.
Whether you are a patient or a physician, we hope to provide the information you need.
Team Cure IBM Will Ride in the 2019 Million Dollar Bike Ride!
Cure IBM has been selected to participate in the Million Dollar Bike Ride in Philadelphia, PA, on Saturday, June 8, 2019!
Team Cure IBM will be one of approximately 25 teams that will raise funds for their specific rare disease. The Orphan Disease Center at the University of Pennsylvania, the sponsor of this event, will distribute the money in research grants. Matching funds are available. ALL of the money (100%) raised by Team Cure IBM will fund inclusion body research.
Team Cure IBM needs riders, event volunteers, fundraisers, and donors. Join us!
REGISTRATION FOR RIDERS IS NOW OPEN!
Click on the large blue button below to donate by credit card!Donate to Team Cure IBM in the Million Dollar Bike Ride!
Checks should be made out to:
Trustees of the University of Pennsylvania
and mailed to:
2020 5th Street, #654
Davis, CA 95617
Cure IBM will send the checks to the University of Pennsylvania so that they are properly credited to the inclusion body myositis fund.
Read about Kevin Dooley, the captain of Team Cure IBM, and the Million Dollar Bike Ride, in the Davis Enterprise newspaper.
Inclusion body myositis, sometimes called sporadic inclusion body myositis, causes gradually worsening muscle weakness, usually starting after the age of 40 or 50. Many people slowly progress from normal walking, to using a cane, then a walker, and finally a wheelchair over a time period of about 15 years, although this is extremely variable. Hand function worsens. Many people with IBM eventually become disabled, in some cases losing the ability to move their arms and legs, and also the ability to swallow. The age of onset and the rate of progression vary significantly from patient to patient.
The cause is unknown. The disease is characterized by muscle inflammation and muscle degeneration, but it has not been determined if the inflammation causes the degeneration, or if the degeneration causes the inflammation, or if something else starts the disease process.
Scientists and doctors are studying IBM, but they need more support. The disease is little known and underfunded, even when compared with other rare diseases. We have the tools. Research techniques have improved tremendously. Lack of money is the main obstacle slowing research progress. Now is the time to make a difference!
Introduction to Inclusion Body Myositis
What is IBM? Who gets it? How common is it?
The diagnosis of inclusion body myositis is based on symptoms of muscle weakness, physical exam findings, and several additional tests.
Inclusion body myositis has no generally effective medical therapy, but many things can be done to improve the lives of people with IBM.
The Cure IBM Blog
Researchers at the Yale School of Medicine in New Haven, CT are looking for patients with inclusion body myositis (IBM) to participate in a study using Electrical Impedance Myography (EIM). The purpose of the study is to learn if EIM is useful for measuring the...read more
Regeneron Pharmaceuticals has confirmed the cancellation of its previously announced Phase 2 clinical trial for inclusion body myositis (IBM). Regeneron had planned to test two therapies in combination to treat this rare muscle disease, which causes gradually...read more
Registration for the 2019 Million Dollar Bike Ride is now open! You can now join Team Cure IBM and register to be a rider in the Million Dollar Bike Ride on June 8, 2019, in Philadelphia. Sponsored by the Orphan Disease Center of the University of Pennsylvania, this...read more
My Personal Story
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Join Cure IBM in the fight against Inclusion Body Myositis. Your support will help fund research and the development of treatment options for this debilitating disease.