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    • #16081
      McKenna Baum
      Participant

      Greetings everyone. My name is McKenna and my father has recently been diagnosed with ALS at age 50. His amazing team of doctors has referred us to two different trials, one being the HEALY platform trial. As a family, we feel sort of lost of which to pick. Any opinions or guidance would be greatly appreciated.

    • #16084

      I do not know this platform but it seems under Merit Cudkowicz supervision.
      As I read daily new research on ALS, I can assure you that she is someone who did a great contribution to the field.
      She is probably one the 10 best US scientists in the area of ALS.

      Jean-Pierre

    • #16083
      McKenna Baum
      Participant

      Here is the link to the trial: https://clinicaltrials.gov/ct2/show/NCT04297683

    • #16090
      Dagmar
      Keymaster

      Hello McKenna – – the HEALY Platform Trial is testing several different treatments. They are listed in this recent news article: https://alsnewstoday.com/2020/08/06/first-patients-enrolled-pivotal-healey-als-platform-trial/

    • #16092
      Owen
      Participant

      I personally would choose the Healey platform trial if it’s available to you. I’m hoping my wife can get enrolled at our local site. It seems to have a few benefits: 1) the platform reviewed something like 40 possible options, and picked the most promising 4-5 to test, so you’re already starting from a more advanced position, 2) they will be testing multiple drugs at once, so there is a higher likelihood patients might receive something beneficial, and 3) I firmly believe that if/when the ALS nut is ever cracked, it’s going to be through a cocktail of drugs, not a single magical bullet, so I’m hoping a breakthrough like that occurs here.

    • #16095
      Mike Minardi
      Participant

      Before you pick a trial. See if you can talk to Merit Cudkowicz at Mass General. She isn’t just one of the best, she is the best.

    • #16098
      Dee Hagen
      Participant

      My husband will be participating in the Healy platform trial. There are several reasons; less placebo, 6 month trial, open label options, 50+ locations and most importantly, his neurologist is actually encouraging about it. We’ve been talking with him about clinical trials since my husband was diagnosed in 2019. He was never encouraging about any of them, until the Healy trial came along. We’re in Washington state and the clinic manager has told us to expect to be admitted to the trial this month.  Crossing fingers.

    • #16100
      Danielle Uskovic
      Participant

      I’d definitely do the Healey trial, due to the reasons listed above by others.

      Another reason is that I’m currently on a trial in Australia called Rescue ALS and the drug is CNM-Au8 (or placebo). It’s one that is also being tested on the Healey platform trial.  I’ve been on it for 6 months and happy to discuss my experience and results if you want to private message me.

    • #16126
      McKenna Baum
      Participant

      Thank you so much for all of the insight. I greatly appreciate it.

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