3/27/2017 by Share Your Story

Myasthenia Gravis: How to support UPenn research on verge of breakthrough

University of Pennsylvania fills gap in rare disease research

Patients living with myasthenia gravis don’t have a color. They lack a viral social media awareness campaign. There’s no ice bucket challenge. No fashionable wristbands.

Dr. Jon Lindstrom

Dr. Jon Lindstrom

But, they have the research of Dr. Jon Lindstrom.

For the better part of a half-century, Dr. Jon Lindstrom has been making slow and steady progress in understanding, treating and improving the lives of patients living with Myasthenia Gravis.

A rare type of muscular dystrophy, Myasthenia Gravis, known simply as MG, impacts the voluntary muscles in the body. It commonly interferes with limb use, swallowing, talking and eye movements. The weakness associated with MG is worsened when the muscles are used, which limits the amount of activity MG patients can perform.

“Today, MG is one of the most thoroughly understood neurological disorders, which has lead to treatments which vastly improve the length and quality of life of myasthenics,” explains the Yale School of Medicine.

Much of what we know can be traced back to Dr. Jon Lindstrom.

His pioneering work revolutionized our understanding of MG as an autoimmune disease. He found that MG tricks a patient’s immune system into attacking a receptor protein in muscles. After that discovery, his UPenn team went to work identifying a potential immunotherapy to treat the disease. In just the past two years, his team has discovered that six weekly treatments could prevent MG symptoms for at least 6 months.

University of Penn MG Research“We think our therapy will be safe and effective and revolutionize therapy for MG,” explains Dr. Jon Lindstrom, the Trustee Professor in Neuroscience at the University of Pennsylvania. “But, if we do not get support to continue our work, no one will ever know.”

The movement in health care towards cost-cutting and value frameworks undercuts research into rare diseases. Myasthenia Gravis affects 1 in every 5,000 people, or roughly 25,000 patients in the United States, which makes it difficult to justify major investment in research for cures.

Dr. Jon Lindstrom’s pioneering research is in danger of being canceled due to funding issues. His lab faces imminent shutdown without funding of his current NIH grant request.

Dr. Jon Lindstrom’s immunotherapy is designed to create a targeted, quick, and sustained response with few side effects, which would be a game changer for patients with MG. Not surprisingly, he’s taking the same approach to securing funding for his research. He’s launched a targeted, quick and sustained social giving page at the University of Pennsylvania.

To support the project, visit Myasthenia Gravis Research at Penn.

Jim Sliney, Jr. is a Registered Medical Assistant and writes educational and advocacy articles for patients with rare and under-served diseases. Jim volunteers for G-PACT.org where he serves on the board of directors and as Newsletter Editor. Connect with Jim on LinkedIn or follow him on Twitter.

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