The Fight Resumes

At last, clarification.  I just talked to my neurologist.  The stem cell trial was finally approved by the IRB.    That is the Institutional Review Board or the Investigational  Review Board.  No difference.  These boards exist to monitor safety and guard against potentially expensive liability issues.  IRBs can be tough audiences.  The last hurdle has been jumped.

It will take days to set up the stem cell infusion.  After forty years, I guess a few more days should not matter.  They do, of course, but that is my problem.  Years of work and millions of dollars are at stake.  I am not so self-absorbed that I believe I am the issue.  This trial is larger than any single individual.  I am but a laboratory rat and proud of it.  Let the battle continue.

37 Responses to The Fight Resumes

  1. James March 13, 2014 at 9:15 pm #

    Im holding hope that this is the first step in kicking this diseases butt! Thank you for your courage

    • Nancy Cincotta March 13, 2014 at 9:32 pm #

      Let it begin we’re ready or should I say your ready for us. Good luck !

      • Richard M. Cohen March 14, 2014 at 8:03 am #

        I am ready.
        Best,
        R.

  2. Stefanie March 14, 2014 at 12:00 am #

    Yay for progress!

    • Richard M. Cohen March 14, 2014 at 8:03 am #

      Amen.

      Best,
      R.

  3. Matt March 14, 2014 at 11:07 am #

    I just got shivers done my back when i read this! I am so happy for you Richard!

    • Richard M. Cohen March 14, 2014 at 8:16 pm #

      Thanks.

      Peace,
      R.

  4. Lori March 14, 2014 at 12:33 pm #

    Great news! So exciting!

  5. Maria Jennosa March 14, 2014 at 3:42 pm #

    Dear Mr. Cohen,

    Everyday I check your blog thinking that you express my sentiments better than I can. I too am a lab rat in a clinical study for the drug Occrelizumab at Stonybrook Hospital (Dr. Lauren Krupp). Mine is to slow the progression of PPMS. Yours however is to fix the problem instead of band-aid it.

    Please continue with all the details because if this gives any glimmer of success, I’m jumping ship.

    I am going into the city tomorrow and hope that the theatre and restaurant have 1st floor bathrooms. I won’t look it up because it might stop me from going! Only someone like you would understand that!

    Best wishes

    Maria Jennosa

    • Richard M. Cohen March 14, 2014 at 8:19 pm #

      Maria-

      It is a long, tough journey. We are walking together.

      Best,
      R.

  6. Cynde Route March 14, 2014 at 4:13 pm #

    Richard,

    I have had MS for 22 years and have been seeing Dr. Sadiq since August of 2012. I am on the waiting list for a stem cell transplant. I hope to start the process in late summer.

    I’m betting you have complete faith in Dr. Sadiq, as I have. If he told me he thinks cutting my head off would be a wise treatment option, I’d do it. I know you are in good hands, and, while like you, I tend not to get my hopes up, I’m hoping you get better, even if it’s just a little bit.

    Thanks for sharing your experiences with all of us. I’m keeping a good thought for you.

    Yours truly,
    Cynde Route’

    • Richard M. Cohen March 14, 2014 at 8:23 pm #

      We are traveling the same tough road. Do me a favor. Don’t cut your head off. Be patient. We will get there.

      Best,
      R.

  7. Michelle Rafanelli March 14, 2014 at 6:30 pm #

    Best of luck and thank you.

    • Richard M. Cohen March 14, 2014 at 8:24 pm #

      M-

      And thank you.

      R.

  8. Mark March 15, 2014 at 7:20 am #

    Thank you for sharing the details, Richard. Have been MIA on your blog because I have been busy with my promotion from RRMS to SPMS. One heck of a ride, isn’t it? But look at the progress. The MS meds started out with daily injections, then weekly injections and monthly infusions. Now stem cell infusion! I think you’re right. We’ll get there.

    Good energy coming your way.

    Best,

    • Richard M. Cohen March 15, 2014 at 12:34 pm #

      Mark-

      Best wishes on your promotion. We will get there. I hope we are around to enjoy.

      ER.

  9. Brian Lilly March 15, 2014 at 4:35 pm #

    Love reading your blog, and I want to thank you for providing it. Although you are much more eloquent, I feel like you speak for me. As i expect is true for many people, your story of how this disease has impacted your life feels strikingly similar to mine. I also appreciate that you try to keep expectations at a reasonable level. But mostly, I want to thank you for being a guinea pig for us. No matter how much promise this procedure may hold, someone still has to go first. That being said, I’m sure you feel as I do when I say ‘now let’s get this party started’!!! Rock on Richard!!!

    • Richard March 16, 2014 at 9:01 pm #

      Yes. Am privileged to go first. No second thoughts. Together we will win.

      Best,
      R.

  10. Theresa March 15, 2014 at 5:24 pm #

    Good luck, Richard. Thank you for sharing the details of your experiences with the trial. Thank you also for sharing the frustration with the disease itself. It helps me understand the internal frustrations that my husband probably has with PPMS, which has been progressing for over 15 years.

    Wishing you the best (or at least some sort of progress in the right direction)!

    Theresa

    • Richard March 16, 2014 at 9:04 pm #

      Theresa (my mom’s name),

      We are on this journey together. I hope to cross the finish line with everybody.

      Best,
      R.

  11. Erin March 15, 2014 at 5:55 pm #

    I follow your blog, and check for updates everyday. I have been living the MS journey for 8 years, and have progressed quite a bit, all while taking care of 2 young kids. I am holding on to the biggest hope that this is our ticket to some relief, even if just a little bit. Feel well Richard, and best of luck! We are all routing for you!

    • Richard March 16, 2014 at 9:06 pm #

      Erin-

      Thanks. I so hope we all get there.

      Peace,
      R.

  12. Kate Aquilino March 15, 2014 at 7:57 pm #

    Wow! What do you want to do first? I would feel like a new, improved person was on her way to m. Hard to keep those expectations in check. I’ll be praying for you.

    • Richard March 16, 2014 at 9:08 pm #

      Kate-

      My expectations are in check. But I can hope. Thanks for your good wishes.

      Best,
      R.

  13. Ted March 15, 2014 at 9:41 pm #

    Good luck Richard

    I went through the stem cell trial at the Cleveland Clinic. Get ready for good things between month 2 and 3. I like that they are injecting the stem cells in to the spine also. Mine was only injected in my arm.

    • Richard March 16, 2014 at 9:11 pm #

      I know about the Cleveland Clinic trial. If we succeed your spine will be next. Good luck to us all.

      Peace,
      R.

  14. Nicole Lemelle March 16, 2014 at 1:36 pm #

    This is huge! Conragulations!

    • Richard March 16, 2014 at 9:11 pm #

      Keep hoping.

      R.

  15. Monica Bennett March 17, 2014 at 10:32 am #

    Richard,
    I know what you mean about the”lab rat” I have been on Tecfidera for a year . Somebody has to be the first ones! I worry about my children getting MS,,,Good Luck !

    • Richard March 17, 2014 at 8:10 pm #

      My three grown kids are about all I worry about. I can take dare of myself. I get it.

      R.

  16. Rosanne Dial March 17, 2014 at 12:59 pm #

    So many brave people battling this disease – I read your blog every day and hope/pray all goes well for you.

    • Richard March 17, 2014 at 8:12 pm #

      Roseanne-

      Thanks.

      Best,
      R.

  17. Lori March 19, 2014 at 1:10 pm #

    I keep checking your “tweets” to see if the day has arrived, yet….I’m impatient and I’m not getting the treatment so I can imagine how you must be. I am your cheerleader from Canada….hang in there.

    • Richard March 19, 2014 at 7:44 pm #

      Lori-

      You’re impatient? Take a number and get in line.

      Best,
      R.

  18. Keithjwaz March 19, 2014 at 7:34 pm #

    Good luck with the next leg of the journey.

    For anyone who wants to participate in this exciting science, it’s worth pointing out the recently started campaign to raise funds for the ongoing and further stem cell research:

    http://www.indiegogo.com/projects/tisch-ms-center-s-fda-approved-phase-i-stem-cell-trial-for-multiple-sclerosis

    I think the big story here isn’t just the exciting new stem cell technology that is going to be tested to repair myelin, It’s also about the manner in which the general population can contribute to the development of science and potential cures, instead of our past models of solely relying on big pharma. I can’t imagine a better use of social media!

    • Richard March 19, 2014 at 7:46 pm #

      Amen.

      Best,
      R.

  19. Brynn Sarff March 23, 2014 at 2:32 pm #

    I am SO pleased to watch your video and I pray for your healing! Back in 2010, I traveled to Poland, and was the first person from the US to receive the CCSVI treatment from Dr Simka, so I relate to the “guinea pig” position! My treatment improved several things substantially, but I have a really good feeling about the direction that you are going and hope to be following your path, in the coming years! I believe that your body is being given the chance to “reset” whatever silly error sent you down this road to begin with. You are in our thoughts, everyday By the way, I saw you son on our local news this week and he is doing a very good job!