...but there are dreams that cannot be...
“…but there are dreams that can not be
and there are storms we can not weather..”
It is upon hearing that sobering verse the we first realize Les Miserable is a different kind of musical, and that there will be no happy ending for this heroine. She is beautiful and young, and singing about dreams when the song starts. Then with this one verse, the tone changes. It’s not what we want to hear, not what we expect to hear (though so typically French). Then we watch as she descends from selling her jewelry, to her hair, to her body under the crushing weight of the “real” world. A world for her, without hope.
One of the privileges of working at Neuralstem, is working in an area which is providing hope for so many people. Conversely, perhaps the toughest part of working here, is when people write and ask about hopes which I know are false. People write from all over the world, wanting to know anything that could possibly help a child, a parent, a sibling, themselves. They send pictures, stories, they ask questions, and I try to answer every one. I can’t and don’t give medical advice or course, but I try to explain where our programs are, where we think we are headed, and (most importantly to them) when we think we might realistically get there. Understandably they ask about (and volunteer for) clinical trials. I explain that the FDA does not allow even the perception of recruiting for a trial before it is approved. It’s not what they want to hear. I believe that our message is mostly hopeful. Our goal is to start (at least) three human trials within the next twelve months, for Ischemic Paraplegia, ALS, and Traumatic Spinal Cord Injury. Yet even so, often I know I am crushing many hopes. The realities of the time and effort required are not what they want to hear; not what they hope for.
Often, people ask about stem cell clinics of one sort or another that they have read about, offering experimental treatments. Clinics in China are often mentioned. There are many different Clinics in China, and it is a mistake to try to lump them all into one category, or to imply that I am knowledgeable about them in any authoritative way. Still, those caveats disclosed, I have tried to find out a good deal about them, and I am probably situated as well as anyone to have an opinion. What I tell people is that, in my opinion, there is NO scientific evidence that any of these clinics is providing a therapy that can help with ALS, or Paraplegia, or a host of other terrible incurable ills with which people are afflicted. It is also impossible to tell what they are actually doing over there, even were it to work. The Hospitals (all run by the Army) are mostly doing blood stem cell or cord blood stem cell transplants, though some claim to be using embryonic stem cells; and they often mix the therapies with traditional Chinese Herbal medicine, drugs, and/or accupuncture. Finally, there is no patient “follow up” or data collection and analysis in the sense that we are familiar with. Mostly what you see are personal blogs by patients and/or their caregivers giving occasional subjective updates on the patients. Often these start out hopeful, but within a short time, all that I have seen fall back to reality, or disappear altogether.
But there is another type of clinic out there, mostly “situated” in the Caribbean or Central America, claiming all sorts of miraculous stem cell cures. These are the complete shams, the frauds. They advertise on “mainstream” media (internet based) and some even have elaborate internet sites which look real and substantial enough. One such site I am often asked about is Medra in California. They purport to have had success using all manner of embryonic and neural stem cells for everything from cancer to ALS, Autism and Paraplegia. I personally called Dr. Rader several years ago describing my own son’s very difficult post operative brain tumor issues, and he assured me that in brain tumor cases they often saw results “right on the table” after infusing embryonic stem cells through an IV for about an hour. It is of course, an outright lie (my lawyers are turning grey even as I write this I suspect). His clinic and all those like it are simply outright frauds. As I recall the treatment was expensive (in the tens of thousand of dollars) but they offered me a discount on the airfare and a vacation package at a nearby hotel. One can only hope that Dante was right, and that there are special circles reserved in Hell for those who prey on desperate people.
Still, even keeping people from the clutches of such as Medra is crushing hope, and that never feels good. We are working as hard as we can, as fast as we can to get there, but as I learn anew each night from your letters and emails, for so many it is neither hard nor fast enough.