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    • #19597

      IDL-2965 reflects true scientific innovation in the biology of treating fibrosis; an area with a significant unmet medical need” – Dr. Bill Bradford.

      This direct quote comes from the press release of the Indalo Phase 1 Trial on IDL-2965 and can be heard, along with more information about this trial in the most recent flash briefing released by Pulmonary Fibrosis News. As a patient living with idiopathic pulmonary fibrosis (IPF), these research studies and clinical trials are promising. The flash briefing continues to talk about earlier testing using the IDL-2965 on animal models, and how the pre-clinical studies showed prominent anti-fibrotic effects. More information about this trial can be found by clicking HERE to listen to the entire flash briefing.

      While it is a promising time for research on IPF, PF and other fibrotic-linked diseases, I can only hope to live long enough to benefit from these studies.

      Have you heard of the work Indalo is doing, or this trial on IDL-2965? 

      If given the opportunity, would you (or have you) participate/volunteer in clinical trials for IPF/PF? Why or why not?

    • #19620
      Jan Riche
      Participant

      Hi Charlene,
      I too hope the medical developments are in time to help you. I have grown fond of you through this forum. I appreciate your honesty and openness. Those are truly wonderful traits.

      As for your question about clinical trials, I am hoping to qualify for a clinical trial called Galapagos. I am hoping that the name which reminds me of Galapagos turtles does not indicate the speed of the trials. I have two reasons to participate, one is that I hope it will help me and the other is I view my participation as a way to help other IPF patients. The gathering of information about this disease, I believe, is vital to finding something to slow it down and to finding a cure.

    • #19622
      Jan Riche
      Participant

      I forgot to add that I conquered the flash briefings. Listened to my first today.

      • #19625
        Joe O’Brien
        Participant

        The other problem forIDL-2965 might be the cost of the medication.

         

        • #19635
          Mark Koziol
          Keymaster

          Hello Joe, hopefully the pharmaceutical company will be able to keep the cost down for the “regular Joe’s” of the world. We do make up 99% of the population. The funny thing is there is an endless supply of cash for the development of these medicines. The lungs are the most complex out of all the organs and when you throw a monkey wrench such as PF into the mix it becomes a complicated mess. Thanks for your comment.

      • #19634

        Hi Jan,

        Thank you so much for your kind words; they truly helped lift my spirits when I have been feeling a bit down as a result of a friend passing. I’ve become very fond of you too, and very much hoping you are doing okay despite your disease progression! Thank you again for the words you shared about my traits; this forum means a lot to me so I am always glad to hear feedback and know that your kind words have made a difference in my day 🙂

        So glad you’ve sorted out the flash briefings, we’re excited about this new way of sharing information with our members. You can expect a new one every Monday and Thursday!

        You are absolutely right in the intention behind joining a trial and the importance of helping all IPF patients, thank you. Moreso though, I hope the drug helps you! When will you find out if you qualify to be part of the Galapagos trial? I hope it doesn’t move like turtles, but instead reminds you of the island, warmth and sun.

        Take care,
        Charlene.

    • #19636
      Steve Dragoo
      Participant

      Hi Charlene,

      I don’t think I would participate in phase 1 even if allowed, maybe not even phase 2.  As this disease ages, I would hate to be in a clinical trial that is successful only to discover I was on a placebo.  Fortunately, it seems some clinical trials originated elsewhere and then come to North America, that one may be able to find that med in a foreign country.

      Steve

    • #19690

      Hey Steve,

      Thanks for chiming in with your thoughts here – I can certainly understand the worry about being given a placebo, as opposed to the drug. I would be concerned about that too, especially given the emotional energy (ie. hope) that I’ve invested in the trial. That said, I also understand the importance of clinical trials to advance us forward so I’m not entirely sure what I’d do if given the opportunity. Definitely benefits and drawbacks to both sides! As always, thanks for writing 🙂

      Charlene.

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