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Thread: Reconsidering speaking at the upcoming FDA hearing

  1. #1

    Default Reconsidering speaking at the upcoming FDA hearing

    I'm scheduled to speak at the upcoming FDA hearing, but now leaning against doing so because I really strongly believe that it's a lost cause and that the agency is holding this charade with the full intention to curtail what's left of cell therapy in the U.S. FDA bureaucrats are the lowest form of life on the planet and I have nothing polite to say to them. They fancy themselves as being above us "patients," and might even get some kind of sick glee out of hearing sick people beg them for a chance to live. I'm pretty sure I'm going to spare myself the emotional pain of facing these degenerates and just focus on what I can still control.
    Last edited by gh253; 08-01-2016 at 06:47 PM.

  2. #2

    Default

    I can truly understand your feeling on this. I believe they and the academic shills that are out to spread fear hold that elitist attitude towards those of us who have the misfortune of being ill. If speaking will cause you emotional pain, then you shouldn't put yourself through it, although I know patients, including myself, would value your voice being part of the record. The lack of compassion from these people is astonishing. Of course, it's all done in the name of science and safety mind you. I have never experienced a more despicable lot to be honest.
    First treatment in 2007. Pioneering ever since.

    Barbara

  3. #3

    Default

    I sent this discussion to a small group of patients who are actively engaged in patients' rights to use their own stem cells. Doug Oliver is part of the group and immediately responded. This is why we shouldn't give up -

    http://www.stemcellpioneers.com/show...-his-blindness
    First treatment in 2007. Pioneering ever since.

    Barbara

  4. #4
    Join Date
    Dec 2015
    Location
    Silicon Valley, CA
    Posts
    12

    Default You can't lose if you don't give up

    Look at how far clinical trials are progressing to prove that stem cell treatments are worthwhile:

    https://clinicaltrials.gov/ct2/show/...em+Cell&rank=4

    When I first looked at the topic of stem cell research for COPD, nothing was available (back in Dec / January 2016). It takes time for progress to be documented, and now that I can see the link to the stem cell treatment trial I'm posting, it goes all the way back to 2014.

    Please remember that you can do a stem cell treatment without government approval if you have the $ to do so. Because we live in America, the land of lawsuits for frivolous reasons, the FDA is really slow to embrace change. Don't give up - the life you save may be your own or someone you know and love. Please reconsider speaking at the conference.

  5. #5

    Default

    I talked to Dr. Centeno today, and he agreed that the hearing is a meaningless formality, the FDA has already made up their minds about what they intend to do, and it makes no difference what anyone says. So I'm going to sit this one out and put my resource toward getting a procedure in the Cayman Islands later this year instead of spending money on a plane ticket to DC. If I can give my time to someone else, whoever wants it can have it.
    Last edited by gh253; 08-02-2016 at 07:16 PM.

  6. #6
    Join Date
    Dec 2015
    Location
    Silicon Valley, CA
    Posts
    12

    Default Won't challenge how you choose to spend your money

    But I will hope that one day the FDA will actually listen to people like yourself who are willing to spend their own resources to find a way to feel better despite their disease.

    In case you haven't seen the 16+ clinical trials in process dealing with COPD and stem cells, please check out this link:

    https://clinicaltrials.gov/ct2/show/...em+Cell&rank=4

    There were 21 clinical trials total, and the one I'm interested in starts on the first page (page 4) of the link I've provided. There are many more options there, so please don't lose heart that the FDA isn't listening to you.

    I, for one, am actively following the results of this particular study which is set to close in 2017. I'm going on a UK vacation, and then I'm coming back to the USA to figure out whether or not the results were worthwhile enough to allow me to pursue this treatment on my own, without FDA blessing. Each of us has to do what we think is best in this particular fight. Good luck !

  7. #7

    Default

    @gh253

    I'm sorry you are burned out with the stem cell regulations battle. I understand, it is certainly draining! This has been my daily effort since 2012, and I am always inspired by Barb's dedication to this cause since 2007! Please reply to the email from CBERPublicEvents@fda.hhs.gov and let them know you would like to donate your time, I would suggest Arnold Caplan, since he has a great solution call "Progressive Approval".

    I requested my presentation for the FDA Part 15 hearing be made by video, since it's real hard to travel across the country in a wheelchair.
    My 5 minute talk: https://drive.google.com/open?id=0B8...1dxWUxuZnJsdmM

    I told my personal stem story about putting secondary progressive MS of 20 years into remission with Celltex cellular therapy. Then for the last minute I emphasize Caplan's plan. I have also been posting it on the hysteria reports over unregulated clinics.

    Like this one today 8/2/16 in Signals
    My comment on: Tip of the iceberg? Scary stuff from international stem cell clinics
    http://stemcellpioneers.com/showthre...l-clinics-quot

    And last week I used the same Caplan comment for the NYT article. There are many great comments from Barb, Doug Oliver, and many other patients. 121 comment so far. And many from scientists in the stem cell field, so far they continue to dismiss the patient opinion, that is why I want to direct them back to their peers, especially these senior scientists. Caplan and Ricordi don't make a big fuss like some of their junior peers such as Paul Knoepfler, they just state the logical and obvious solutions. May calmer heads prevail!

    Stem Cell Therapies Are Still Mostly Theory Yet Clinics Are Flourishing
    New York Times 7/28/2016
    http://www.nytimes.com/2016/07/28/up...ermid=19315879

  8. #8

    Default

    Thank you SammyJo for your valuable insight and the information about donating time. You are a shining light. I agree that Arnold Caplan would be an excellent choice gh253. I am going to stick this thread. It's very important that everyone reads the info you posted.
    First treatment in 2007. Pioneering ever since.

    Barbara

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