Bits and Pieces: Including NMSS Neuroregeneration Webcast Recap

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Well, it's time for another edition of Bits and Pieces, my semi regular compilation of various items, mostly related to MS, which have recently caught my attention. First though, a quick note about some housekeeping I was forced to do here on Wheelchair Kamikaze.

Due to an onslaught of spam being left in the comments section of older posts, I've been forced to institute the "post moderation" option made available by Blogger, the host of this site. In plain English, this means that all comments left on older posts will have to get my okay before they are officially posted to the site. I resisted this option for a long time, primarily because I don't believe in censoring anybody's opinions, but also because I'm too damn lazy to have to okay every comment left on older posts. Unfortunately, the spamming efforts of one organization hawking CCSVI testing and treatment have forced my hand. This organization, The CCSVI Clinic (click here), was recently cited as being a something of a scam in the Canadian press (click here).

UPDATE: I've been in contact with the CCSVI Clinic, and I've been assured that the spamming is not coming from anywhere within their organization. They are actively trying to find the source of this electronic harassment, and have recently been the victims of vandalism, slander, and hacking. Hopefully they will be able to resolve these issues quickly, and to their credit, the individuals I've spoken at the organization with have been forthright and genuinely helpful.

And now, on to our smorgasbord of Wheelchair Kamikaze delicacies…

· On 01/11/11, the NMSS held a one-hour webcast entitled "Repairing the Nervous System in MS: Progress and Next Steps". The webcast featured four experts in the field, and it is well worth watching the archived version, or reading the transcript, both of which are available on the NMSS website (click here). Much stimulating information was featured, including info on evolving strategies for stimulating the body's own resident stem cells to repair damaged nervous system tissue, as well as the use of adult and embryonic stem cells to affect these same kind of repairs. Also discussed were the efforts currently underway of developing drugs that will protect nerve cells from the damage that the MS disease process inflicts, and perhaps stimulate myelin repair. One such drug currently under development by Biogen blocks the protein Lingo-1 (click here), which inhibits the body's production of myelin. Phase 1 human trials of this drug are currently underway. Even if radical new approaches prove to be able to stop the progression of MS (say, like, CCSVI) the repair and regeneration of the nervous system will still be of primary importance, as stopping the progression of the disease alone will not restore function to patients with long-term nervous system damage.

Okay, that's the good news. The bad news is that the best case scenario for all of these wondrous developments is that they are at least 5 to 10 years away from being available to the general patient population, far too long for most of us to wait. Not only do trials and testing take time, but getting proper funding for large-scale trials is a daunting task. There is a gaping chasm in our medical research model between developing innovative treatments in the lab and bringing them to market, and this fault is so endemic to our system that it's often referred to as "the valley of death" by medical researchers. Organizations such as the Myelin Repair Foundation (click here) are feverishly trying to tackle this tremendous problem, but the simple fact is that the current research model is horrifyingly dysfunctional, which I wrote about extensively in a previous post (click here).

· It's long been known that MS attacks women in greater numbers than men. Actually, this is only true of Relapsing Remitting Multiple Sclerosis, as Primary Progressive MS attacks men and women in equal numbers. Regardless, new research into the genetics of the disease reveal that women are more likely than men to carry a gene variant associated with Multiple Sclerosis (click here). The study finds that women are 1.41 times more likely to have a MS related gene mutation in an area of the human genetic code linked to MS. Additional information (click here) showed that women are also more likely to pass the "MS gene" onto their female children, which further explains the female: male difference seen in the disease. It's thought that this gene variant is not naturally occurring, and rather comes about through an interaction with environmental factors. This change in genetic structure due to interaction with the environment is a relatively new discovery, and is referred to as epigenetics. Some of the environmental factors that might contribute to an MS gene mutation could be stress, diet, smoking, vitamin D exposure, or exposure to toxins or infectious agents. Interesting stuff…

· In this curious bit of news, a 53-year-old man admitted to dressing up as a Canadian Mountie as part of a sexual role-playing game (click here). Normally, although well worth reading, a news item such as this wouldn't warrant inclusion in Bits and Pieces, except that the first line of the article notes that the man is a Multiple Sclerosis sufferer. This isn't mentioned anywhere else in the piece, and I have no idea how it relates to this gentleman's predilection for donning the uniform of a Canadian law enforcement officer in an attempt to pick up men. He was caught in uniform three times, twice after taking his Mountie dressed self to police stations, on one occasion to drop off a box of doughnuts. Our MS stricken mock Mountie now faces the possibility of six months in prison. So, if there is a lesson to be learned here, it is that if by chance you find yourself strangely drawn to dressing like a character in Bullwinkle for the purposes of sexual satisfaction, don't use your MS as an excuse. It won't fly, at least not in Canada.

· In another odd bit of MS related news, an MS riddled human brain is being featured in an exhibit at a London art gallery (click here). A British member of Parliament was quoted as saying, "this is a disrespectful way to treat the human body and is unacceptable.” Many others simply commented, "yuck!" Personally, although I'm no art critic, I find it hard to understand how the brain of an MS patient could be considered a work of art, unless of course the lesions on that brain formed a portrait of Elvis Presley, in which case I'd want to buy it and keep it permanently displayed our dining room table. I'm pretty sure that Karen wouldn't let me, though…

· On a more serious note, a batch of alcohol pads possibly contaminated by bacteria was included in kits distributed to patients using the MS drug Copaxone (click here). If you are on Copaxone, or any injectable drug for that matter, please check to see that your alcohol pads were not manufactured by a company called Triad, or use any of these names on their packaging: Cardinal Health, PSS Select, VersaPro, Boca/ Ultilet, Moore Medical, Walgreens, CVS, or Conzellin.

· As many of you know, I'm an avid amateur photographer, and shoot with a camera mounted to the arm of my wheelchair (please see my photo gallery on the left column of this blog). Here's a very cool video made up of over 30,000 individual photos, shot with a technique called tilt shift photography, which involves the use of special lenses. The effect of this technique makes every day scenes look like they are parts of miniature dioramas, and this video of a day in the life of New York City is, to me at least, is the very definition of "eye candy". Thanks to my buddy Weeble for sending me this video…

'Tis the Season

Image by Amarand Agasi via Flickr

Alas, it's that time of year again, when folks of all races, creeds, and colors turn their attentions to friends, family, and the brotherhood of all mankind. A time when all thoughts of the self are shunted aside and give way to the beneficence of faith, hope, and charity. Filled with the spirit of the season, a heartfelt kinship for one and all is celebrated throughout the land...

Okay, let's cut the crap. The holidays are upon us and it's time to party like Tiger Woods, hopefully without getting hit upside the head with a nine iron. In between imbibing too much eggnog (I'm not quite sure what nog is, but it sure helps put the "spirit" in the holidays), giving yourself carpal tunnel from spending countless hours on Amazon.com, and fake smiling your way through holiday office parties, this is a great time of year to give the gift of giving, by donating generously to the charity of your choice. And while I genuinely feel nothing but warm fuzzies for helping the homeless, abused children, or neglected animals, worthy causes all, there is one particular crusade that is near and dear to my heart, and, I suspect, yours, since you are reading this blog.

I speak, of course, about the fight against Multiple Sclerosis. I truly feel that we are on the cusp of some incredible breakthroughs in this battle, from the tremendous promise of stem cell research, to the unraveling of the genetic mysteries presented by the disease, to the recent excitement that has spread like wildfire about the possibility of MS being a vascular disease (the CCSVI theory). On many fronts, the war against MS is finally yielding the kind of results that can be translated from the intellectual exercises of the laboratory into the hard-core realities of patient care. Although the ultimate answers may still lie just beyond our reach, momentum is building, and it's not entirely delusional to have real hope that some momentous breakthroughs may be just over the horizon.

When thinking about making donations to the fight against MS, the one organization that universally comes to mind is the National Multiple Sclerosis Society. To the population at large, the NMSS has become THE face of the struggle against MS . Because of the huge amount of publicity generated by NMSS sponsored events such as MS walks and bike rides, many other worthy organizations fighting the good fight against MS get lost in the Society's shadow.

Please don't get me wrong, the NMSS provides many valuable services and resources to the MS community, but there are smaller organizations slavishly devoted to the complex fight against MS that also deserve attention (and donation dollars). Besides, the Wheelchair Kamikaze has a visceral distaste for conformity, and a natural affinity for the little guy, so why donate your hard-earned cash to the same monolith that everybody else donates their money? It just so happens that I know of a few smaller MS groups devoted exclusively to MS research, whose work I believe to be vital to the fight against Multiple Sclerosis.

Three of my favorite lesser-known MS nonprofit organizations are The Accelerated Cure Project, The Myelin Repair Foundation, and The Multiple Sclerosis Research Center of New York. These terrific, energetic organizations take a very hands-on approach to tackling the the puzzles of Multiple Sclerosis, and work tirelessly on the behalf of those who've heard the dreaded words, "You have Multiple Sclerosis". Here's a little bit about each of them:

• The Accelerated Cure Project- Founded by an MS patient, this nonprofit is dedicated to curing MS by determining its causes and mechanisms. They have established an "MS Repository" of blood samples and data that has been made available to all scientists and companies that have promising ideas that might potentially benefit people with MS. Lack of access to high-quality samples and data from MS patients has been a major obstacle that has long plagued MS researchers. For scientists investigating MS, the MS Repository, which so far includes blood samples from over 1000 MS patients, is a gold mine of hard to get materials that can be used for analysis and experimentation. The compiling and organizing of the repository requires a tremendous amount of time and effort, and the funding for the endeavor comes primarily from individuals and families directly affected by MS. MS patients can also choose to participate in the repository itself by donating blood at one of the ACP's participating MS clinics (more information is available on The Accelerated Cure Project website). And, yes, the repository does include samples of the Wheelchair Kamikaze's blood, which for some reason is kept in a lead lined container and is under 24-hour guard by a detachment of specially trained Sasquatches.
• The Myelin Repair Foundation-The MRF, also founded by an MS patient, was created to break down the barriers in medical research and commercial drug development that work against the rapid delivery of patient treatments. All too often, researchers work in a kind of vacuum, and often consider each other rivals rather than partners in the battle against MS. The model under which research is currently carried out often presents hurdles to true collaboration among researchers in different laboratories and research groups. The MRF has developed the Accelerated Research Collaboration model, a radical new approach to medical research whose primary goal is the rapid translation of laboratory discoveries into real-world patient treatments. As its name would suggest, The Myelin Repair Foundation has made identifying myelin repair drug targets that will lead to treatments for MS its sole focus. The MRF is heavily involved in investigating the potential of stem cell research, as well as other therapies designed to physically repair the damaged nervous systems of MS patients. The Accelerated Research Collaboration model has proven so revolutionary that many believe it has the potential to change the way of all medical research is conducted. Gifts to the MRF will be matched by a challenge grant from another generous donor, effectively doubling the size of any donation.
• The Multiple Sclerosis Research Center of New York-The MSRCNY is an independent research laboratory that is headed by the Wheelchair Kamikaze's own neurologist, Dr. Saud Sadiq. Under Dr. Sadiq's direction, the center conducts groundbreaking research into identifying the cause of MS, understanding the mechanism and progression of the disease, examining new treatment strategies, and studying ways to repair and regenerate nervous system damage. Considered one of the finest independent MS research laboratories in the world, the MSRCNY is staffed by world-class researchers and doctors whose sole focus is defeating Multiple Sclerosis and increasing the effectiveness of MS patient care. Dr. Sadiq and his staff also deserve enormous admiration for putting up with the constant pestering of some wise ass crackpot who likes to drive his wheelchair much too fast. Thanks to the generosity of an anonymous donor, tax deductible contributions to MSRCNY will be matched dollar for dollar, doubling the value of any donation.

All of these organizations do incredibly valuable work, and are truly worthy of any donations that you, your family, or your friends would be kind enough to make. If you have MS, donating to The Accelerated Cure Project, The Myelin Repair Foundation, or the Multiple Sclerosis Research Center of New York is truly a case of helping yourself by helping others. If you love someone with MS, there could be no finer expression of your affection than a donation made on their behalf to any or all of these groups.

Of course, there are other extremely worthy organizations doing terrific things to help combat MS, and I don't mean to slight any of them by exclusion. The Accelerated Cure Project, The Myelin Repair Foundation, and the Multiple Sclerosis Research Center of New York, though, get the exclusive and much sought after Wheelchair Kamikaze stamp of approval...