Our Goal is a Cure for Inclusion Body Myositis

Inclusion Body Myositis (IBM) is a debilitating muscle disease that eventually causes severe physical disability. After Roger was diagnosed with this rare disease, we took a personal interest in how it affects people and impacts their lives. We learned as much as we could on our own and had an opportunity to meet a number of courageous patients who shared stories of their daily challenges and solutions for their evolving physical limitations. We also met several dedicated medical professionals who are working to understand IBM and seek treatment for their patients. We decided we would do what it takes to find a cure for this disease and created the Reach Our Goal Fundraiser. We plan to raise $1 million dollars for IBM research to enable Dr. Steven Greenberg to continue his work and ultimately find a cure for Inclusion Body Myositis.

On March 11, 2014, nearly 200 people gathered at Overlake Golf and Country Club in Medina, WA in what was the largest gathering for an IBM event. We were overwhelmed with the attendance and the generous gifts from the community. This is an excellent start, but we realize our ambitious goal requires help from many more people from across the country and around the world. Please consider joining us and making a pledge via the PayPal link. We are humbled and energized by the support of our family and friends, and thank you for joining us in our fight to cure IBM. Please click here to view photos from the first R.O.G. event.

Roger and Jennifer Gulrajani

What is Inclusion Body Myositis?

IBM is an inflammatory muscle disease characterized by slowly progressive muscle deterioration. It is considered a rare disease, affecting approximately 50 per million people, more frequent in men than women and generally those over the age of 60. The disease first affects the muscles in the legs, making it difficult and eventually impossible to stand and walk without assistance. It also affects muscles in the arms, which causes an inability to grip or use ones fingers. Falls resulting in major injury are highly common. Another serious complication is weakness in swallowing as these muscles are also affected during the course of the disease. Generally, people affected with IBM are unable to walk within 10-15 years of symptom onset and require a wheelchair for mobility.

What Treatment Exists
for IBM?

At present, there is no known treatment or cure to stop the progression of IBM. People with IBM slowly lose strength and mobility, requiring long term assistance to function. Grants are extremely rare and there is virtually no funding available for an “orphan” disease such as this. Dr. Greenberg’s research has already resulted in a blood test to diagnose IBM and he is working with Novartis on a promising, yet limited, drug in its early clinical trial stage. We believe additional research is critical to solving this medical mystery.

What causes IBM?

The cause of IBM is unknown. It is not considered hereditary and seems to strike people at random. As with most autoimmune diseases, there may be a link between genetics and then a trigger in a person’s life. At that point, a person’s immune system turns against its own muscles and mistakenly attacks healthy tissue. There is also a degeneration component, which is characterized by the appearance of holes in the muscle. Until the basic causes can be researched and determined, it is challenging to develop treatment and a cure.

How Can You Help?

Given the rarity of this disease, there are virtually no grants or funding for IBM research. Dr. Greenberg has the desire and sees a tremendous opportunity and desire to cure IBM, but private funding is critical. We hope you will join us in supporting his work through the IBM Foundation. With his dedication, we believe there is real HOPE for a cure.

Dr. Steven Greenberg
and the IBM Foundation

Dr. Steven Greenberg is a neurologist who specializes in the care of patients with the disease Inclusion Body Myositis. He received his medical degree from Harvard Medical School and has been in practice for over 21 years. He is currently an Associate Professor of Neurology at Harvard Medical School and also directs an IBM research program at the Brigham and Women's Hospital. Dr. Greenberg established the Inclusion Body Myositis Foundation (IBMF) with Nayda and David Utterberg in Seattle three years ago.

The purpose of the IBMF is to find the cause of and treatment for IBM. All IBMF resources are dedicated to understanding, stopping and reversing IBM muscle damage. It is the only non-profit focused solely on conducting IBM research in collaboration with other physicians and scientists. All proceeds from our event go directly to the IBM Foundation, which is a registered 501(c)(3) organization.

To make a donation by check, please make payable to The IBM Foundation and mail to:

The Inclusion Body Myositis Foundation
897 Washington Street, #600005
Newton, MA 02460