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.
Cure IBM believes it’s time for change!
- Time for increased awareness
- Time for prompt and accurate diagnosis
- Time for research
- Time for treatment and a cure
Million Dollar Bike Ride Inclusion Body Myositis Research Grant
Cure IBM rode for research in the Million Dollar Bike Ride in Philadelphia, PA, on Saturday, June 8, 2019!
Team Cure IBM exceeded expectations by raising enough money to fund a $102,430 grant for inclusion body myositis research. Thirty riders traveled to Philadelphia to be part of the inclusion body myositis cycling team, including many novice riders. It was great fun and extremely rewarding. Thank you to everyone who joined us in Philadelphia, and to everyone who donated. It was a team effort!
Because of the success of our team, we have been invited back to participate in the 2020 Million Dollar Bike Ride, to be held Saturday, June 13!
Applications have been received and reviewed for the 2019 research grant, and the winner of the grant will be announced soon.
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
Arimoclomol, an investigational drug currently in a Phase 2/3 trial for inclusion body myositis (IBM), has received Fast Track designation from the FDA for treatment of this disabling muscle disease. This designation is designed to shorten the time needed for the FDA...
Hall of Fame Night Randy Marks, who coached Villanova’s lacrosse team for 24 years, had the enormous pleasure of introducing his son, Brian, as he was inducted into the Villanova Athletics Hall of Fame last February. A former star athlete himself, Coach Marks was...
Our team of 30 bike riders will be cycling on June 8 in the Million Dollar Bike Ride, an annual rare disease fundraising event sponsored by the Orphan Disease Center at the University of Pennsylvania. This year, for the first time, we have a team representing...
My Personal Story
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