Researchers at the neuromuscular program at the University of California at Irvine are conducting a study to identify how much of a role pain plays in sIBM. If you have inclusion body myositis, please consider completing the survey linked here. Your participation in this research project is very important and will help us understand your disease better. Link to survey: https://goo.gl/forms/6MJ8vSh7zqGEEATJ2 If you have questions or concerns, please contact: Veena Mathew Clinical Research Coordinator Department of Neurology UCI MDA-ALS & Neuromuscular Center 200 S. Manchester Ave Ste. 130, Orange, CA 92868 T 714.456.2864 F 714.456.6526 firstname.lastname@example.org Thank you for your help.
I found a link to Patrick Warner's videos on the Myositis Canada Facebook page (you should join if you haven't already). He has come up with some terrific modifications to his home that allow him to live independently. Check out this blog post and videos: https://cureibm.org/inclusion-body-myositis-patrick-warners-accessible-home/