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2007-08-24 - 12:42 a.m.

A reader recently posted a very sweet note in my guestbook suggesting I point folks to a place they can make donations for MS (research I assume). That�s a real good idea and I never thought of it before. It�s very exciting that so much progress has been made on figuring out MS. Like I�ve said, I�m no Pollyanna and I don�t expect the cavalry to come in time for me (not that it wouldn�t be nice�). But I do dream of a future in which no one else has to go through this.

So first of all, don�t give to the National Multiple Sclerosis Society. They�re the people who organize the MS walks and bike-athons. They�re not a scam or anything and I�m not saying you should hate on them. But a lot of their money goes to� Well, not to research anyway. Now maybe a bit of this is sour grapes, as I�ve had a few bad experiences with them. But I suspect that the group (founded 1946) has fallen victim to Michel�s Iron Law of Oligarchy, which says that any organization will eventually lose sight of whatever cause it was originally founded to uphold and end up just representing itself.

When I was newly-diagnosed, I saw that they had meetings/support groups for the newly-diagnosed. But none of them seemed to be in Boston proper; they were all in the suburbs. I saw there was a meeting at the regional MS Society office in Waltham, a town not too far away that I thought was on the commuter rail, and called to see how to get there. The woman who answered started giving me driving directions. I said I didn�t have a car. How can I get there via public transit? That stumped her. She thought she�d seen a bus nearby, but she wasn�t sure. Argh. Never mind; this is ridiculous.

Also early on when I was newly diagnosed, I realized embryonic stem cell research (this was early 2001, when it was still a fairly arcane topic and only science geeks were fully familiar with the ins and outs) could have a tremendous impact on me. I emailed the National MS Society to ask if they were advocating for the issue. I got back a very terse reply saying that they had no stance on stem cell research. I was quite upset by this. You would think they�d be at the forefront of advocating for research that could help people with MS. Then I realized it was far better for fundraising to steer clear of any politically controversial topic�

So the National MS Society may indeed help someone, but it�s not me. Who should you donate to? Well, I�m a big fan of charities that pass almost all their money on to research efforts. A lot of things are at preliminary stages still. They�re not even sure if MS is a single disease or a group of similar conditions. There are suggestions that the animal model for MS (EAE) may recreate the symptoms, but not actually bear any similarity to the underlying illness. Until quite recently, it was unknown what the genetic component was.

But efforts are progressing. Figuring things out (dare I say finding a �cure�) is the name of the game now. Ten years ago there was no serious treatment for MS. Today there are several injectable drugs: Avonex (which I used to take, because you only shoot up once a week), Betaseron (and its clone Rebif), and Copaxone. There are heavier guns too, like Tysabri (the awesome new drug that I�m on) and Cytoxan (the chemotherapy drug I used to be on � even going from Providence to Boston to get it).

More treatments are in the pipeline. It�s never a good time to have an autoimmune disease, but now is certainly a better time than ever before. As my neurologist noted when I started Tysabri treatments, this is good for now, but it�s not permanent. Something better will invariably come along. It bears repeating: nothing can stop human progress. Disease may have me now. But eventually and inevitably it�ll be conquered. Hopefully in our lifetime. No, hopefully tomorrow. As a touching billboard around here says: Find a cure for MS and they�ll rename Lake Michigan after you.

So donate to:

The Accelerated Cure Project for Multiple Sclerosis
This started off as the Boston Cure Project in my old hometown. One of their main tasks is simply compiling a repository of samples of genetic and medical data on a huge number of people with MS. Surprisingly this hasn�t been done before, even though having relevant data makes so much more research possible. (You can read a detailed explanation of why it hasn�t been done before here. But basically it�s more expensive than any single grant would cover, it�s a logistical nightmare, and it wouldn�t lead to the publishable results needed to keep funds coming to a given research group.) Check out their �Cure Map� of what they�re doing.
Donate by credit card now. Checks payable to:
Accelerated Cure Project
300 Fifth Avenue
Waltham, MA 02451

The Montel Williams MS Foundation
The talk show host is probably the most famous person currently living (now that Richard Pryor has passed away) with MS. Currently, 100% of donations go directly to funding research to find a cure for MS. Montel covers all fundraising expenses himself. (He�s also a big partisan of medical marijuana as a pain-killing palliative, which you wouldn�t expect from a former Marine, but hey whatever works.)
Donate by credit card now.

Really, curing MS is a good cause. Please donate.

� 2007 Geoff Gladstone

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