[curtis-mumpower]

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-mumpower]

As a follow up, I’m also working with another research group,  ALS TDI (Therapy Developement Institute) in Cambridge Mass. doing voice & motion tracking thru their Precision Medicine Program(PMP). They are a doing a great amount of drug research and have recently brought a drug(AT-1501) they developed into the trial phase.(Phase 2). You may be able to participate in a drug trial thru them. ALS TDI.com

 

[curtis-mumpower]

Hi Carolyn! As I recall, it was about 2 weeks before I found out I was approved. A big reason I was recommended for the trial as I said was that my respitory and swallowing are still very good and I am less than 36 months from diagnosis. The other 2 drugs, which names I can’t recall at the moment, are taken orally. One being a pill, the other a liquid. They will be continually adding drugs to the trial so if you don’t qualify for one now, there may be one in the future. Not sure why I was picked for the injection type since my swallowing and breathing are good. I think they knew my wife would enjoy sticking me in the stomach every morning! (Haha, just kidding). Hope this is helpful.

[curtis-mumpower]

My ALS Dr at the University of Iowa Hospitals & Clinics in Iowa City Ia suggested that I would be a good candidate for the Healy Trials as my respitory & swallowing are still very good.  Had to go thru a qualifying process(blood work, respitory testing, urinalysis & strength testing). They also sent me a full overview of info on the trials with breakdowns on each drug and it’s risks and known side effects. There was also information included on doing additional blood work for DNA work up etc & also for spinal fluid collection(both of these are optional). All test results were sent to the research facility @ Massachusetts General Hospital in Boston. I was then randomized to a drug regimine(Zilucoplan). Next I had to go and receive a meningitis vaccination as one of the risks with Zilucoplan is that it can cause meningitis. I had to wait 14 days after the vaccination to begin the trial.   I went Nov  5th to begin the drug trial. This was approximately a 6 hour process as I opted to do the extra blood work & lumbar puncture for spinal fluid. This intital process included very detailed testing of muscle strength, respitory, urinalysis, a questionnaire regarding my mental state in the prior 2 wks as well as watching a video on administering the Zilucoplan shot daily and a practice session for myself & my wife on giving the shot. They also had me download an app on my phone to do voice recordings 2X a week which are sent directly to the research team. It is a 24 wk trial but you can opt out at any time. However, if you opt out of the drug you are randomized to, you have to wait until the end of the 24 wks to start a different drug. Also, they will do another lumbar puncture at week 16 for more spinal fluid to compare it to the first sample to see how the neurons are reacting or not reacting the drug.  It’s a double blind study so neither you nor you Dr knows if your getting the drug or placebo. So far I’ve had no side effects from whatever may be in the syringe. Just a little burning sensation when I inject the syrum. Sorry for the long comment. Wanted to give a first hand account of my experience. Hope it helps.

[curtis-mumpower]

Hi Dagmar! Yes. ALS does/has slowed me down. Especially in the last couple of months. Was diagnosed 11/2019. My decline has been relatively slow so far with most of my weakness in my hands until recently. I’m noticing that my legs are becoming weaker but my brain tells me to keep on keeping on, which I do but it wears me out pretty significantly.  I need to learn to stop and take a break more often but I’m working on it.

[curtis-mumpower]

I began having twitching in my right bicep 4 maybe 5 years ago. Lightly at first then more prominent over a few months. Then spread to my left arm and then my legs. Noticed in2/19 that I was losing strength in my right hand and also began noticing muscle atrophy in my right hand at that time as well. By 9/19 was noticing significant loss of strength in my right hand and began losing strength in my left hand as well. Went to my pcp in 10/19, he noticed right away the atrophy in my hands and sent me for an EMG which led to examinations from 2 neurologists and an EMG specialist whom all agreed it appeared to be ALS. Received my “official” diagnosis from my ALS specialist 11/19. So far progression has been fairly slow affecting my hands. Beginning to feel a little weakness in my legs but still walking on my own two feet without any assistance for now. Twitching is constant but does subside while I’m sleeping. The more active I am the more the twitching but I’ve learned to live with it. Don’t even pay attention to it any more.