ms. fresh fish

April 6, 2006, 1:58 pm
Filed under: general

Thank goddess (term stolen directly from my favourite gosspier, Lainey – see “best sites” page),  the MS Society has finally made itself useful. I’ve been bitter and irritated for about three years after doing the two-day MS bike tour, dragging two of my loveliest friends along with me, to raise money for the disease that has been intent on ruining my brother’s life. Why have I been bitter and irritated? Because the $600+ that we contributed went into a big pot that, as far as I can tell, did butkus (sp? point is clear, anyway).

That being said, I’ve recently realized that my fundraising efforts have to date been a bit bizarre. Last year, for instance, I raised over $300 for breast cancer and donated over triple that to other various causes, mostly in the cancer family. Saying that those efforts were not for a good cause (or that I won’t continue to support my friends and loved ones’ fundraising efforts to the best of my abilities) would make me a gigantic moron, and that’s, for once, not what I intend to be. I know why I donate money to support people, however, I have been wondering of late why I’m not fundraising for research and services for people with the wacko diseases that have surfaced in my genetic pool.

And so, it is with great pleasure this morning that I heard on the CBC that the MS Society has in fact done something useful! You see, our family hasn’t been able to access any of its services, which has led us to hope that the money is really going towards research to find a cure for the mysterious and volatile disease. I hadn’t thought of lobbying, but that’s indeed what the Ontario region seems to be doing in this instance.

Here’s the thing. Lots of people with MS are young and become incapacitated, forced to live in wheelchairs at very young ages. My brother has been walking (more or less) with a cane for several years now and because his MS is progressive, the worry is always that it will get worse soon. Without a cure, it will get worse. The question is when.

So, what happens with these young people with MS (or other debilitating diseases) who cannot live alone and need care more than a family can provide? Well, they are being placed in homes for seniors. About a year ago, we thought we were going to have to look into this route and I started calling homes in Montreal. All the homes seemed to refer me to the one they all knew about – that had the other young person (about 35) with MS. I’m sure you get the point, and this obviously has implications for people with all sorts of diseases and disabilities (including Lupus – another blog to follow about that beauty). For further information on what seems to be the beginning of this much needed public discussion, check out the paper below.

Position paper released by the Ontario chapter of the MS Society today (also covered on CBC Radio):

Marco and I are doing the SuperCities Walk for MS this year and as I promised, this will be the only time that I solicit funds from my friends and loved ones. My fundraising page – please donate early and often (and generously): (there’s a photo of my bro and I on the page too – and more info about him)

p.s. Thanks to my first official fan, Shane, for the kind words of encouragement. I better see a serious donation from you to reward me for all the entertainment I’ve been providing you!


2 Comments so far
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Is there any better reward/high for a Blog junkie than having the object of their admiration recognize them in one of the daily submissions!?!?! The answer is NO! It is so cool – and to think, yesterday I figured that I couldn’t possibly be a bigger fan! You ROCK Lori! I also have to say that you are devious and wiley….cause I thought it was very cool how you intro’d your donantion page and commented on donation “early and often and generously”! GOLD! I actually laughed out loud! And then I got to my name….and almost hit the floor! Cause how can I not donate tonnes of money now!? I’m a mega fan – and I’m likely embarrassing myself immensely right now….but if/when I see you on the street or wherever, I will be asking you for your autograph and otherwise attacking you like you did to poor Joe Clark’s daughter that one time….remember??? lol

FFD Junkie

Comment by Shane

Hi Lori
I have just come across your blog and have read it with interest.MS research is conducted all over the world and funding for these organisations would run into hundreds of millions of dollars. Say a research institute in Europe discovers a new drug or procedure that can help sufferers, this knowledge will be shared with every other research institute globally.Whilst your fundraising for research is to be commended I feel you need to focus your fundraising efforts on the immediate and long term needs of your brother.Housing and care for young people with a disability like MS or ABI is of little interest to government, not too many votes it seems. Should you wish to explore the possibilities of raising money and awareness for a housing project for your brother and others I think that would be a really worthwhile project and one that would give you a lot of satisfaction. I have had a long involvement with fundraising and may be of some assistance. Good luck. Peter M.

Comment by peter mornement

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