clinical trial

  1. F

    Dr. Bedlack and Lunasin.

    Hi everyone, I have a question. Dr. Bedlack was here last Saturday. Part of his presentation was on Lunasin. I would like to start the regimine, However, the only way to buy, the products is through a distributor. I sent Dr. Bedlack an email asking if he knew of another way to purchase...
  2. konagirl

    Hype or not?

    We are new to this world, as you all were at one point. I am embarrassed to say, but before the letters ALS were mentioned to us by a neurosurgeon, and I began researching, I had never really even heard of it other than the ice bucket challenge. Now, I see articles all the time, hear news...
  3. N

    Need Advice on Clinical Trials

    Hi, my husband has been diagnosed with ALS. He is 36 years old. Dr. Bedlack said that he is about 1 year into progression. His breathing is at 101%, which is good according to them. He has 60% strength in his right hand and 36% strength in his left hand. He has left arm/hand weakness and...
  4. D

    Familial ALS research

    We have a long history of ALS in our family, dating back at least 4 generations (losses include my mother, grandfather, great grandfather, and many distant relatives). I was surprised to know that my family didn't have much documentation or research to pass along to me when I was diagnosed. My...
  5. konagirl

    Clinical Trial Decisions

    Hello, My husband is eligible for 3 different trials coming up in the next month or so under Mayo here in Jacksonville (Dr Boylan). Because they will all overlap on time frames, we have to chose just one. I'm curious to know, does anyone have any experience with the phase 1 trials? My gut is...
  6. J

    Clinical Trial Of Brain Iron Reduction "The FAIR-ALS study is to investigate the safety and efficacy of a scavenger treatment of iron deferiprone, which would reduce the brain iron to limit the development of amyotrophic lateral sclerosis. It has been shown an excess of iron in the...
  7. V

    Breathing issues?

    So I'm trying to figure out if my dad needs help with his breathing. He says he has trouble breathing at night intermittently sometimes and same thing during the day but even less often. He has been feeling tired more during the day and sometimes has headaches. The problem is hes in the...
  8. N

    Beloved nanny of 6 years diagnosed this week

    Our beloved caregiver/friend/family member was diagnosed this week. She is a single mother to a 12-year old son in Brooklyn, NY, and while my mind is swimming with lists of to-dos, questions about medications and holistic treatments, clinical trial availability, and so much more, the most...
  9. N

    ARrgggg, what to do? (Tirasemtiv or NP001)

    OK, I go on Tuesday 12/1 for my initial screening for the Tirasemtiv Phase III trial but I check my email today and received this for the NP001 Phase II at Cutter. <snip> Dear Brad, Thanks for your interest in the NP001 study and your patience as we get the study organized. I am very...
  10. danrising

    Ongoing Clinical Trial of MN-166 in ALS

    I started this trial in October. Dr Brooks in Charlotte NC