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Myositis Support and Understanding Association (MSU) is a patient-centered, all-volunteer 501(c)(3) nonprofit organization Empowering the Myositis Community. Founded by Myositis patients, for Myositis patients, MSU provides education, support, advocacy, access to research and clinical trial matching, and need-based financial assistance.

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3 Comments
  1. Louise Samantha Jane Green 5 years ago

    The video was very good and hopeful. Yet it was indicated by Jerry Williams two months ago as having been a negative study. Does this mean arimoclomol has been ruled out as a treatment. Is rapamycin being considered anywhere for the treatment of IBM?

  2. Jerry Williams 5 years ago

    Unfortunately, it was a negative study and has been ended. We are working hard to move forward to the next opportunities to help find a treatment for IBM.

  3. Louise Samantha Jane Green 5 years ago

    When will arimoclomol be available as a treatment for IBM in the UK? My father has suffered from it for 10 years now, getting progressively worse and is now unable to walk without a frame and can only get up from a raised chair. His consultant had heard of the drug but did not realise it could be a treatment for IBM.

    Thank you.

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