I've very rarely used Wheelchair Kamikaze to directly appeal for charitable donations to help any individual research project, as I've always been extremely wary of abusing the trust that's been built up between me and my readers. Very recently, though, I've been alerted to a cause that I feel is so fundamentally worthwhile that I decided to devote this entire essay to making such an appeal.
It is my most fervent desire to see crippling neurologic diseases wiped from the face of the planet, and to put the nightmarish world of such diseases firmly in the realm of history. There is a long-awaited research project currently in need of funding that has the potential to radically change the MS treatment landscape. Before I get into the dollars and cents of things, though, let me first provide a little background.
One of the most cherished dreams of every patient suffering from the ravages of multiple sclerosis is to see their losses reversed, to one day triumphantly trash their canes, walkers, and wheelchairs; to at long last find eyesight restored, withered limbs strengthened, and numbed minds sharpened. For those whose lives have been victimized by MS, this is the stuff of reverie, a hope so precious that it can sometimes feel taboo to speak of for fear it may be crushed.
It is the power of such dreams that make the use of stem cells to treat multiple sclerosis one of the most tantalizing areas of study currently underway in the world of MS research. Stem cell therapy offers the hope of repairing damaged tissues in the central nervous system, thereby restoring function lost to the scourge of disease. All currently available MS therapies seek, at best, to put the brakes on disease progression. None are targeted at or capable of neural regeneration, the process by which damaged nerve cells might be fixed and lost function thus regained.
Despite exciting headlines and overhyped internet buzz, the reality is that research into the use of stem cells to repair MS damage is only now taking its first baby steps. Like most paradigm shifting scientific breakthroughs, the realization of the dreams for stem cell therapy will take time, the effort of brilliant minds, and money. There are currently only two FDA approved trials of the use of reparative stem cells to treat MS, one at the Cleveland Clinic and the other at the Tisch Multiple Sclerosis Research Center of New York ( click here ), which is associated with the clinic at which I am a patient.
Both studies intend to use stem cells derived from a patient’s own bone marrow in an attempt to repair the damage done by the disease. The type of stem cells being used are called mesenchymal stem cells, or MSCs. The Cleveland Clinic extracts bone marrow from their trial subjects, separates out the MSCs, multiplies them in a laboratory, and then reintroduces them intravenously into patients’ bloodstreams in the hopes that the cells will, through a variety of mechanisms, temper the MS disease process and stimulate nervous system regeneration.
The study at the Tisch Center uses a more complex but also potentially more powerful approach. After more than a decade’s research by a team of scientists dedicated solely to stem cell therapies, led by Dr. Saud A. Sadiq, researchers at the Tisch Center have developed a proprietary method for turning raw mesenchymal stem cells into neural progenitor (NP) cells, a type of stem cell specific to the central nervous system (CNS) that, in theory, should be extremely effective at repairing CNS damage at the source of the problem. The process begins in a similar fashion to that being used at the Cleveland Clinic: bone marrow is extracted and MSCs are separated out from this raw material. The Tisch Center, though, goes several steps further, taking those MSCs, and, using a recently patented process, inducing them to transform into potentially more potent NP cells. These neural progenitor cells will be injected directly into the spinal fluid of trial subjects, in three individual treatments, each given at three-month intervals. Preliminary studies using animals have provided very encouraging results, and nervous system damage has actually been reversed. The Holy Grail of MS research may finally be within sight.
The Tisch Center, which is an independent facility unaffiliated with any university or hospital, had been attempting to get FDA approval of their proposed trial for many years. Despite the tremendous advances made at The Center’s research facility, federal regulators have insisted time and time again that more evidence be provided and that further animal studies be done. Throughout this arduous process the staff of researchers at Tisch refined their techniques and methodology, hard work that ultimately met with success. The Tisch Center finally received their coveted FDA approval in August, 2013. That glow you see coming off of your screen may be the first light of a radical new age in MS therapy creeping over the horizon.
Unfortunately, one major roadblock stands in the way of launching the now FDA approved Tisch Center MS stem cell trial: funding. Though the Tisch Multiple Sclerosis Research Center of New York is a registered nonprofit organization, almost all of its fundraising efforts thus far have gone into the research that has made this trial possible. The cost of the initial 20 patient trial will be about $600,000. Towards reaching that end, the Tisch Center has set up a funding page at the crowdfunding website Indiegogo, where people from all over the world can contribute any amount from one dollar to fifty thousand dollars or more to help set the trial in motion ( click here ). For those in the US, the Tisch Center’s foundation is fully 501(c)(3) compliant, so any donations made are completely tax-deductible. The Indiegogo campaign has a set goal of raising $300,000 by April 14, 2014 at 11:59 PM PT. The campaign has already collected over $100,000 in donations, so as of today there’s about $200,000 to go. Detailed information on how these funds will be spent is available on the Tisch Center’s Indiegogo funding page ( click here ).
It may seem strange that an FDA approved trial should lack sufficient funds to get started. The Tisch MS Research Center of New York is an independent research organization funded solely through charitable donations, a status that has allowed it to pursue audacious research goals, but which also means that it doesn’t have the deep-pocketed resources that a research group affiliated with a well-endowed university or hospital might. Medical insurance does not cover the costs incurred by patients undergoing trials, and researchers at Tisch consider it unethical to require trial subjects to pay for unproven treatments.
Traditionally, medical research has been funded by the federal government or, increasingly, by the big pharmaceutical companies. Ongoing battles over the US federal budget have resulted in the (in my opinion unconscionable) slashing of medical and scientific research funds to paltry levels (click here , here , and here ), and thus far no pharmaceutical company has funded any trials using a patient’s own stem cells, quite likely because the success of such a trial could have a tremendously negative impact on the mega-profits many companies are making selling MS disease modifying drugs.
It is a matter of record that the pharmaceutical industry concentrates tremendous resources on influencing the FDA (click here , here , and here ), and is actively lobbying to have the FDA declare that a patient's own stem cells are pharmaceutical products (click here , here , and here ), an outrageous claim (again, my opinion) which would effectively shut down independent stem cell research organizations like the Tisch Center and place adult stem cell research firmly in the hands of Big Pharma. It is always vitally important to remember that these are public companies whose legal mandate is to continually expand their bottom lines, a motivation that sometimes puts shareholder interests at odds with those of the patient. Big Pharma innovations have dramatically increased the quality of life for some MS patients, but the reality is that conflicts of interest arise when there are billions to be made treating a disease, not curing it. Yes, I’m fully aware that to some the previous sentences may read like the rantings of a paranoid schizophrenic, but if I’m completely nuts, I’m in good company. Please read the material linked to above, which includes an opinion piece from the bastion of anti-capitalist radicalism that is the Wall Street Journal, and connect the dots…
As stated earlier, I’ve rarely used this blog as a platform to solicit donations for any cause or organization, but I feel funding the Tisch Center MS trial is tremendously important to people with MS and all those who love them. I’m sick of being sick, and I’m sick to death of watching many of my MS friends slip ever further into the clammy grasp of this horrendous disease. Because of the atypical nature of my illness, I very likely will not be part of the 20 person trial, so I’m not making this appeal on my own behalf. At least not directly on my own behalf, as the success of this trial stands to benefit all patients suffering from not only MS but a wide variety of other neurodegenerative disorders, and traumatic brain and spinal injuries as well.
So, from the bottom of my Wheelchair Kamikaze heart, I ask all of my readers to do themselves or their loved ones a favor and ( click here ) to donate even the smallest amount to move the Tisch Center’s stem cell trial forward. And please, please, please pass the word along (or forward this blog post) to family and friends using email, Facebook, Twitter, or any other newfangled thingamajig or whatchamacallit to help make this cause go viral, as every donation great or small could very well take us that much closer to the stuff that dreams are made of…
Sorry, couldn’t resist conjuring up a little Humphrey Bogart there at the end. I was a film major, after all. Speaking of film, the below video detailing the Tisch Multiple Sclerosis Research Center of New York’s stem cell trial and fundraising effort is also available on their Indiegogo fundraising page ( click here ).
Tremendous thanks in advance to all who find it in their hearts to make a donation.