Sunday, December 19, 2010

Ho Ho Ho-Now Give Me Your Money

A&P, COFFEE, SANTA CLAUSImage by George Eastman House via Flickr

No, I don't want your stinkin' money, but if you are looking for places to do some charitable giving this holiday season (and before January 1, so you can write it off on this year's taxes), I thought I'd provide a list of some of the more esoteric MS related nonprofits that could certainly use whatever funds you might be able to spare. I know that times are tight, and many of us can barely afford to keep ourselves afloat, so please know that I'm not trying to guilt trip anybody. But If you do suddenly find yourself sprouting a full set of white whiskers, an expanding girth, a red velvet jumpsuit, and an unquenchable urge to give, here are a few places worthy of your dough re mi…

· CCSVI Alliance (click here)-this is a new organization devoted to helping further research and learning about CCSVI and its treatment. Although only a few months old, the CCSVI Alliance is already starting to see its presence felt, and is sponsoring events such as a CCSVI Walk-n-Roll in Tampa Florida (click here), and a learning symposium at Brandeis University in Waltham, Massachusetts (click here). Future plans include sponsoring panels to encourage dialogue between neurologists, interventional radiologists, and patients, and the funding of CCSVI treatment research. (Full disclosure-I am a member of the CCSVI Alliance's Patient Review Board, but please don't punish them for their dubious choice of friends).

· Buffalo Neuroimaging Analysis Center (click here)-often referred to as BNAC, the center is currently conducting numerous CCSVI trials, including ongoing imaging studies and one of the few CCSVI treatment studies currently underway. BNAC is home to a dedicated group of CCSVI researchers, led by Dr. Robert Zivadinov, a world-class research neurologist. BNAC has until January 1 to reach a fundraising goal of $150,000, which will be matched dollar for dollar by a grant from the Direct-MS Foundation. BNAC offers some innovative fundraising options, including the hosting of MStery parties (click here), which have been held around the country. I had the pleasure of personally attending one of these parties here in New York City, and virtually attending one held at The Pink Door restaurant in Seattle, Washington, during which I had the honor of introducing Dr. Zivadinov, live via Skype. Oh, the wonders of modern technology…

· The Myelin Repair Foundation (click here)- The MRF is the world’s largest non-profit research organization exclusively focused on developing the next generation of MS treatments—myelin repair. By aggressively dismantling the walls that exist between researchers and labs that often compete rather than collaborate, the MRF is in effect building an entirely new research model, which is a necessity of the utmost urgency, as our current research model is horribly flawed (click here for Newsweek article on this topic). The founder of the MRF, Scott Johnson, is himself an MSer, and his tireless efforts, and that of his organization, have already led to some innovative scientific breakthroughs that hold the promise of fulfilling the Holy Grail of MS research, the repair of nervous system damage done by the MS disease process. In just five years, the efforts of the MRF have led to 19 new potential myelin repair drug targets, 24 new research tools for neurological disease research, 18 patentable inventions, more than 50 articles published in peer-reviewed journals.

· The Accelerated Cure Project (click here)-The Accelerated Cure Project for Multiple Sclerosisis a national nonprofit organization dedicated to curing MS by determining its causes. The organization's main effort is the creation of a large-scale, multidisciplinary MS Repository of blood samples and data from people with MS and matched controls. The ACP makes these samples available to researchers investigating the causes of MS and other demyelinating diseases. In exchange for access to the repository, researchers agree to return the data they generate from the samples so that results from disparate experiments can be combined. So, the ACP not only wants your money, they quite literally want your blood, too. The Accelerated Cure Project holds in its repository over 40 tubes of the Wheelchair Kamikaze's blood, which, as I've noted in previous posts, are for some reason kept in a specially designed lead lined box, guarded by a detachment of highly trained Sasquatches.

· The Multiple Sclerosis Research Center of New York (click here)-The MSRCNY is headed up by my personal neurologist, Dr. Saud Sadiq (who I affectionately call Dr. Big Brain, because he's really smart). In addition to his clinical practice, Dr. Sadiq runs the MSRCNY, an independent, private not-for-profit research entity dedicated exclusively to research into the cause, treatment and remedy of MS. Areas which the Research Center is investigating include identifying the cause of MS, understanding the mechanism and progression of the disease, new treatment strategies for MS, and, most excitingly, neural cell repair and regeneration. This last area of research includes explorations into the use of adult stem cells to repair the damage done by MS. Just as an aside, I've heard that the MSRCNY has some marmosets, but they have so far refused to allow me to play with them. I suspect that if I keep arguing with Dr. Sadiq about CCSVI, though, he may try to turn me into a marmoset. If he promises to turn me into a marmoset that can walk, I may just go for the deal. I'm not sure how Karen would feel about being married to a marmoset, but she's pretty easy going…

So, there you have it, five lesser-known MS nonprofits that are very worthy of your charitable donations. To all of my readers, I wish you from the bottom of my heart a very Merry Christmas, a belated happy Hanukkah, a good Kwanzaa, and a joyful (and belated) Eid-al-Adha.

And to ring in the holiday, here's one of my favorite rock 'n roll Christmas songs, done by The Waitresses, a band the 18-year-old me saw perform at the now long gone Peppermint Lounge on W. 45th St. in Manhattan, on New Year's Eve, 1981, at about 5:30 AM.

Good times, those…

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  1. Thank you Marc. I LOVE that song!!!

    Happy Holidays to you.

  2. And for the Canadians -
    The second largest MS charity in Canada. They are one if the groups funding BNAC.

  3. Happy holidays, Marc. Thanks for the charitable gift suggestions and merry xmas song! May 2011 bring good things to you and yours :)


  4. Merry Christmas Marc,
    I hope the new year brings good news for all of us!
    God Bless,

  5. Thanks for the plug, and happy holidays! BTW, "Married to a Marmoset" would make a good sitcom name, don't you think?

  6. I wish I had money to give to these organisations, but as I don't, I will go on working to make them known for everybody, specially spanish speakers (we don´t have much information in spanish yet)
    Happy new year!!!