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 for Inclusion Body Myositis
Team Cure IBM is participating again in the Million Dollar Bike Ride this year, raising money for an inclusion body myositis research grant.
Last year we exceeded expectations by raising enough money to fund a $102,430 grant for inclusion body myositis research, which has been awarded to Dr. Steven Greenberg of Brigham and Women’s Hospital and Harvard Medical School. 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!
This year’s ride was scheduled for June 13, 2020, but, because of the coronavirus pandemic, the ride in Philadelphia has been cancelled, and has been replaced with a virtual ride. Team Cure IBM is still riding near home, when possible, and working to earn another research grant. We need to raise at least $20,000 to qualify for matching funds so that a grant to study IBM can be awarded this year.
For more information, read this Cure IBM blog article about Dr. Greenberg’s grant and the 2020 ride (written before the coronavirus caused cancellation of the ride in Philadelphia), and this article about the current efforts of Team Cure IBM.
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
Due to the coronavirus pandemic, Team Cure IBM will not be able to ride our bikes in Philadelphia this summer. However, although the University of Pennsylvania, the sponsor of the Million Dollar Bike Ride (MDBR), has cancelled the ride, the MDBR will still continue as...
Thomas Blaettler, MD, the Chief Medical Office of Orphazyme, has released a statement to the global community regarding the status of the ongoing arimoclomol clinical trials during the coronavirus (COVID-19) pandemic. Arimoclomol is currently being studied for...
The following is a message written by Tom Lloyd, MD, a myositis specialist at the Johns Hopkins Medical Center. Can Chloroquine Cure Coronavirus? Not so fast… In a press conference today, President Trump discussed what the FDA was doing to accelerate approval of...
My Personal Story
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