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

Applications are Now Being Accepted for an Inclusion Body Myositis Research Grant

 

Team Cure IBM participated in the Million Dollar Bike Ride again this year, resulting in a $68,245 research grant for the study of inclusion body myositis. Researchers from around the world are now able to apply for this grant, which will be offered and administered by the Orphan Disease Center of the University of Pennsylvania. Letters of Intent (LOI) are due by September 18, 2020.

Learn more about the Million Dollar Bike Ride and the research grant.


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?

Diagnosing IBM

The diagnosis of inclusion body myositis is based on symptoms of muscle weakness, physical exam findings, and several additional tests.

Treating IBM

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

The Million Dollar Bike Ride Needs YOUR Help!

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...

read more

My Personal Story

Support IBM Research

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.

Share This