[Michael Stedman]

Kasper, first thank you for your service to this country.  I appreciate your weighing in and making your perspective known.  I am in no way going to characterize you as a lucky one, but the fact you have lived with ALS for 13-14 years makes you an outlier in the world of ALS patients. Based upon some commentary, it may be likely NurOwn helps some significantly and others not so much.  That may be the dilemma with respect to why it’s not being played up more (some speculation freely admitted here, based upon inference).  Also, I am inclined to be optimistic given what the disease is doing to my wife and the thousands of other brave ALS patients fighting the good fight under difficult at best circumstances.  My wife and I pray regularly for her situation and others across the globe who too are suffering from ALS.  Kasper, may God bless you and all those afflicted with this awful disease.

[Michael Stedman]

First of all, I am grateful for the education and perspectives provided within this forum.  Many years ago, a casual friend of mine became afflicted with ALS and I saw him once or twice in the months preceding his demise and death.  A year ago, I was reintroduced to ALS when my wife was diagnosed with it.  Having a spouse with ALS is certainly a life changer and I have sought to educate and inform myself so as to be of real assistance to my wife.  I follow multiple forums, which I would presume many pALS and caregivers do as well.  Some may be characterized as more militant, but to my mind all are working toward the day ALS has been drastically altered in its symptoms or even cured!

Not intending to be offensive in anyway, but it seems relatively obvious that NurOwn is not anything remotely related to a final cut in research.  However, in terms of the “hope” factor, NurOwn has stimulated such hope.  Based upon review, there is not just one person who has benefitted from NurOwn, there reportedly are several if not many people who have experienced positive results.  (See prior Nightline reporting, reporting from ALS advocates No More Excuses, etc.  It was expressed in this stream that researchers should focus on ‘stopping progression’ – it appears NurOwn has done just that and more.  Not only stopped progression, but allowed some to experience improvement from their prior physical limitations (e.g. standing, pulling in a clutch on a motorcycle and actually riding a motorcycle).

With that in mind, there was a recent meeting between the FDA and Brainstorm Cell Therapeutics (NurOwn) regarding the possible fast tracking of NurOwn for approval by the FDA going back and seeing what can discerned up to this point in time regarding NurOwn efficacy.  Hurrah!  Quite frankly, when I hear people express that is might be risky or dangerous, an ALS patient such as my wife could care less!  How many ALS patients will die in the next year waiting for a possible effective treatment?

Regrettably, the almighty dollar factors into the equation as one could anticipate and expect. That is little comfort to the thousands of ALS patients fighting this horrific disease.  Yes, there is a balance to be achieved knowing there are not unlimited resources.  However, we all can appreciate that veterans suffer a disproportionate percentage of ALS patients in this country (about double as I understand it).  I was glad to see DOD is attempting to earmark more research dollars for ALS for its impact on the veteran community.

I was not part of the Radicava inception process and was unaware of the hope it generated in the ALS  community.  As I understand it, in all honesty, Radicava and Riluzole likely slow the progression some, but at varying rates depending upon the individual.  That’s not exactly what could be called real hope!

Again, grateful to be part of the dialog and of course my thoughts are my own and I am certainly desire to hear the opinions and thoughts of others.