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 pu…[Read more]

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 ab…[Read more]

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 l…[Read more]

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…[Read more]

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 s…[Read more]

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…[Read more]