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Curtis Mumpower replied to the topic What are your opinions and thoughts on volunteering for ALS clinical trials in the forum Research Topics 2 years, 1 month ago
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]
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Curtis Mumpower replied to the topic Getting involved in clinical trials in the forum Living With ALS 2 years, 6 months ago
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]
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Curtis Mumpower replied to the topic Getting involved in clinical trials in the forum Living With ALS 2 years, 6 months ago
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]
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Curtis Mumpower replied to the topic Getting involved in clinical trials in the forum Living With ALS 2 years, 6 months ago
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]
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Curtis Mumpower replied to the topic Does ALS slow you down? in the forum Living With ALS 2 years, 12 months ago
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]
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Amanda and
Curtis Mumpower are now friends 3 years ago
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Kathryn F. Kennedy and
Curtis Mumpower are now friends 3 years, 2 months ago
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Curtis Mumpower changed their profile picture 3 years, 2 months ago
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Curtis Mumpower replied to the topic Do you experience muscle twitching? in the forum Living With ALS 3 years, 2 months ago
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]
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Curtis Mumpower became a registered member 3 years, 4 months ago
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Hello Curtis, and welcome to the ALS forum. I’m Amanda, one of the co-moderators. Thank you for joining the ALS forum. Please take a look at the topics and ongoing discussions. You are invited to join in, comment, ask questions to our members and/or post discussion topics. If there is a topic you would like us to post, just reach out and let us k…[Read more]
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Hello Curtis,
Welcome to the forum! I am one of the forum moderators, as well as a person who is also living with ALS: I was diagnosed in 2010.
If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. If you have any questions, concerns or even…[Read more]
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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.