• I began the Healy Drug trial in 11/2020 & was randomized to Zilucoplan. My reason for signing up was probably the same as most.  The chances for receiving the actual drug were much better than other studies and even if I didn’t receive the drug, hopefully my participation would help someone else down the road. I also agreed to do the 2 lumbar punctures that were part of this particular drug study. I finished with the study 1 week ago and did not have any noticeable side effects from taking the drug so I have chosen to continue on in the OLE (open label extension) where I know for sure I am getting the drug.  My progression prior to the study was fairly slow and I feel that it has remained slow while taking the drug.  The OLE will continue for 52 weeks and my Dr. said it could be in definately if my progress remains slow. Of course they (Healy trial scientists) could stop the study at any time if they feel that the drug isn’t doing any good so we’ll see what happens.

    • Curtis, that sounds great. There are several people in this online community that are also participating in the HEALY program. It will be interesting to see what there experiences are like. Please continue to keep us posted on how you are doing and what you think about the treatments.

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