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My name is Jane Tueche, and I am suffering from a degenerative muscle disorder called Inclusion Body Myositis, or IBM.

IBM is a debilitating disease, often necessitating a wheelchair, feeding tube, and breathing support. We don't know what causes IBM, but I'm told it's on the rise.  It is the most common muscle disease attacking people over 40, although younger people get it too.  The prevalence of IBM in the population is similar to ALS; however, there is significantly less funding for research of IBM. Currently, there is no treatment, but I have found Dr. Steven Greenberg at Harvard’s Brigham and Women’s Hospital, who is one of the few doctors working to find a cure for this crippling disease.

Only a few years ago I was healthy and active.  Now, my muscles are deteriorating rapidly all over my body. I cannot close my fingers to grasp objects, or climb stairs without railings. I have difficulty walking and often fall. Simple tasks like washing my hair, getting out of a chair, and buttoning my shirt, are challenging now, typically requiring assistance. Swallowing is difficult and I often choke on my food, which is very scary. As a mother of two teenage girls, I cannot do things that other mothers can do, such as climb into the bleachers to watch their soccer game or go on a bike ride together. With this deterioration comes an increasing dependency upon others, which has taken a mental toll as well. If they don’t find a cure soon, my disease will continue to worsen, and I worry that it will affect my breathing and ultimately take my life. Thankfully, my two daughters and a devoted husband keep me going.

Dr. Steven Greenberg has taken me under his care.  He is one of the few doctors that has the desire and skills to cure IBM. His research led to the discovery of an antibody now used to diagnose IBM patients, and has been instrumental to support new clinical trials. He is a talented neurologist who specializes in the care of patients with the disease. He received his medical degree from Harvard Medical School and has been in practice for over 22 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.org), which the only non-profit organization dedicated to discovering a cure for this crippling disease in collaboration with physicians and scientists. There is very limited funding through the NIH for IBM research, approximately $8 per patient.  Thus, I'm asking for your help to support Dr. Greenberg's work, which represents the strongest chance to find a cure.  Please consider supporting Dr. Greenberg's research through IBMF.org to uncover a treatment for IBM.

To have your money donated to IBMF, please indicate "IBMF" in the "Share a comment on Fundraiser" box at the bottom of the page after you've made your donation. IBMF is a 501c3 non-profit organization and is tax deductible.  Alternatively, you can choose to donate directly to Jane's Medical Expenses. The costs are putting a financial strain on her family. To make a donation directly to Jane, please indicate "Jane" in the "Share a comment on Fundraiser" box at the bottom of the page after you've made your donation.

 

 

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