Help me Fundraise to Fight MS

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Help me Fundraise to Fight MS

Postby professor science » Fri Jul 16, 2010 9:17 am

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Re: Help me Fundraise to Fight MS

Postby professor science » Tue Jul 20, 2010 8:59 am

Thanks Rajiv! You're the top donator so far!
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Re: Help me Fundraise to Fight MS

Postby Mandeep D » Tue Jul 20, 2010 12:28 pm

dammit! how much do I have to add to be Top Dog?

Maybe we could make this interesting; how about an auction where the highest bidder gets to pick Rob's attire for the ride? :idea:

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Re: Help me Fundraise to Fight MS

Postby professor science » Tue Jul 20, 2010 4:35 pm

FYI: Stephen Litt is also taking part. Search his name when you get to one of the donate pages if you want to contribute to him.
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Re: Help me Fundraise to Fight MS

Postby mushroom_curry » Tue Jul 20, 2010 4:43 pm

I will live/bike vicariously through you while chained to my desk.

How's the training going? Saw the updates on Facebook. Good work!
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Re: Help me Fundraise to Fight MS

Postby professor science » Tue Jul 20, 2010 6:33 pm

I'm not nearly where I'd like to be at this point, but I still have 20 days to build up some endurance.

I'm heading out for 40k tonight. :)
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Re: Help me Fundraise to Fight MS

Postby Dreamstate » Tue Jul 20, 2010 6:57 pm

40,000??????
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Re: Help me Fundraise to Fight MS

Postby Maraschino Larry » Tue Jul 20, 2010 7:02 pm

Raj donated $40 000!!?!?!!???? :shock:
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Re: Help me Fundraise to Fight MS

Postby professor science » Tue Jul 20, 2010 9:14 pm

I wish!

I mean I just road 46 kilometers tonight. :) Felt great at the beginning. Started to fade a bit around the 30k mark, but still finished with a pace faster than my last 30k ride. For the first 30k I was averaging 28 km/hr.
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Re: Help me Fundraise to Fight MS

Postby professor science » Mon Aug 09, 2010 7:45 pm

Last week before the ride!

Please get your donations in! :)
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Re: Help me Fundraise to Fight MS

Postby professor science » Mon Aug 16, 2010 9:22 am

Thank you everyone for your help! Without you, there would be no hope for eliminating or finding more effective treatments for Multiple Sclerosis.

In total, the event raised about $277,000 for MS research and support for those living with MS. I was astounded with this figure. There were just under 500 riders.

Both days were incredible. There was plenty of help available for anyone riding, lots of water and food stops, and an incredible atmosphere.

I'd like to invite all of you out to join my team next year. There were some people who picked up their bikes days earlier, got in zero training and finished the ride. The free massage and good food didn't hurt to spur them on.

Thanks again for everything!

Cheers,
Rob
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Re: Help me Fundraise to Fight MS

Postby Dreamstate » Mon Aug 16, 2010 10:16 am

Holy smokes, that's a good amount of money.
Glad you had fun :)
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Re: Help me Fundraise to Fight MS

Postby professor science » Mon Aug 16, 2010 11:55 am

no kidding, I was surprised when I heard that!
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Re: Help me Fundraise to Fight MS

Postby professor science » Wed Apr 13, 2011 6:59 pm

Doing this again this year.

This time with a team of at least 4 other people. The Grieben, Cara and myself are only a few of them. I'd, once again, like to ask for your support for this ride. Last year I raised $1101 to end MS and this year I am looking to get $2500.
What is MS?
Multiple sclerosis (MS) is an unpredictable, often disabling disease of the central nervous system which is composed of the brain and spinal cord. The disease attacks the myelin which is a protective covering wrapped around the nerves of the central nervous system.

Multiple sclerosis is a complex disease and the Multiple Sclerosis Society of Canada is here to help. No one needs to face MS alone. In communities across Canada, our volunteers and staff provide information, support, educational events and other resources for people with MS and their families. Researchers funded by the MS Society are working to develop new and better treatments. Their ultimate goal is the cure for MS.

Sunday afternoon, my mom was trying to walk back to her room to take a nap, and she couldn't pick up her left leg. She knew she needed too, and you could see in her eyes that she was doing everything possible to move it, but the signal from her brain could not reach her leg.

This disease is one which I wish upon no one. It's a debilitating disease that takes the smallest bits of personal freedom away daily, slowly taking away the ability to move extremities with ease, coordinate movements or regulate body temperature. Sometimes it is slow and progressively debilitating, sometimes it attacks and remits, but in any case, it is awful. Multiple Sclerosis is not hereditary, it is not genetic and the causes are not entirely known at this point.

Next week, my mother and father are flying to Germany to have CCSVI treatment. This is a promising treatment that provides a reduction in MS symptom severity to some of those diagnosed with MS, but not all. My mother has primary progressive MS, so it is unlikely that this treatment will provide much, if any, relief from the symptoms, but at this point, experimenting and hoping is better than sitting around waiting for it to be cured.
Possible Benefits
Anecdotally, we understand that thousands of individuals worldwide have had a CCSVI-related procedure performed. The reports from individuals range widely. Some people report that they were tested but no blockages were found in their veins. Others describe little or no change in MS symptoms. Many others report moderate or even dramatic improvement in symptoms.
People have observed increased warmth and sensation in their hands and feet, a decrease in fatigue, improved heat-intolerance, better balance and mobility, and a decrease in pain among other reported improvements.
According to Dr. Zamboni's initial studies, the treatment was of benefit for relapsing rather than progressive forms of MS. 47% of those in Dr. Zamboni's study re-stenosed (had blockages in their veins again) within 18 months of the procedure.

Yes, his name really was Zamboni.

The funds that you voluntarily donate go not only to research, but also to providing programs and therapy to those who live daily with MS.

Sometimes it is slow and progressively debilitating, sometimes it attacks and remits, but in any case, it is awful. Multiple Sclerosis is not hereditary, it is not genetic and the causes are not entirely known at this point.

I cannot ask you enough, please give generously. Not simply for me to reach my goal, and not for my mother, but for those in your life who you cherish who are not diagnosed with MS. It affects women 3x more frequently than it does men, but typically, men are more severely affected by MS.

I sincerely, wholeheartedly appreciate anything you can contribute.

If you'd like, you can contribute to the team, and donations are split amongst it's members (http://msofs.mssociety.ca/2011Bike/SponsorTeam.aspx?&PID=1273565&L=2), or you can contribute directly to me (http://msofs.mssociety.ca/2011Bike/Sponsor.aspx?&PID=1273565&L=2). I don't care how it's done, but please help.

With all of my love and gratefulness,
Rob
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Re: Help me Fundraise to Fight MS

Postby wide_load » Thu Apr 14, 2011 8:33 am

Kims mom has had the CCSVI treatment twice now, first in Bulgaria, second time in California.

First time showed promising results with her regaining slight movement in her fingers, toes and even her arm after years of having no ability at all to move them.

The second time they believe it is too early to tell the results (just got back a couple weeks ago), but have seen first hand the "miracles" this surgery can accomplish. Examples being patients before her Mom going in in a wheelchair and walking out of the hospital days later after surgery.

In saying that, Kims family has lost hope in the MS Society, which seems to be a growing trend among people with MS from what I can see. Sad but true, and I am not 100% sure of all the details but I believe the lack of support for the CCSVI treatment is one of them.

Rob, if your family wants someone to talk to in regards to the surgery, Kims family would be more than happy to have the discussion.

Best of luck to both your Mom on her surgery and also your fight to raise money for such a truely devistating disease. I also wish this on no one as I have a few friends now with moms with MS and have seen first hand the toll it takes on everyone. I'm just glad the families behind them are so strong and always willing to give it their all to help out.
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Re: Help me Fundraise to Fight MS

Postby professor science » Thu Apr 14, 2011 9:11 pm

wide_load wrote:In saying that, Kims family has lost hope in the MS Society, which seems to be a growing trend among people with MS from what I can see. Sad but true, and I am not 100% sure of all the details but I believe the lack of support for the CCSVI treatment is one of them.

I completely understand this sentiment, my father is the treasurer of the KW chapter and hears this frequently. There are thousands of persons who have experienced positive results from this procedure. When there is such a positive possible outcome from this CCSVI procedure, how can the MS Society not promote this procedure?

Through the MS Society, my father has met quite a few people who have gone abroad for the treatment and some of them have experienced wonderful things, other have had little to no improvement and there have been worse consequences for others. There is so much uncertainty in this process. There is little consensus in the imaging modality required to assess the blockage, there is little consensus in the treatment modality as well. In our health care system it is next to impossible to recommend, let alone prescribe, a treatment around which there are so many unknowns. There is little certainty in who this treatment is best for, how does it affect them long-term, etc. and the medical professionals cannot risk their careers and certifications on a procedure with this much uncertainty.

Maybe I'm just drinking the society's kool-aid but I see it as this. If you are an individual, you may opt-in to any treatment which is available, you may assume the risk for such treatments, but as a professional, you may not recommend the treatment if the outcomes are not at least fairly certain and well documented.

*disclaimer: this is a combination of what I have read and what I have heard. I cannot confirm with supporting documents.*
Dr. Zamboni's original study showed that only about 50% of those imaged with MS had the blockage, furthermore, of those imaged not diagnosed with MS, somewhere around 40-50% had some blockage of those same veins. How can this procedure be recommended if we don't know why/how/for whom it works?

There is research now taking place in Canada, and the MS Society is supporting these projects, but they are unable to formally recommend it as a treatment at this point. In addition to this, CCSVI treatment is just that, another treatment modality. The objective of the society is really to search for a cure, in *addition* to finding viable treatment options.

Canada has among highest rate of MS diagnosis in the world. MS isn't cured, there are a few treatment options, but raising money for it cannot hurt anyone with MS. AIDS is not cured, there is some treatment, but we still raise money for it. Cancer isn't cured, there is a treatment, and we raise a LOT of money for it.

I don't know where I am going with this, I just want people to understand where the Society is coming from. They don't want anyone with MS to suffer more than they are, but are restricted in what they can do in our climate. I can't really say much else.
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Re: Help me Fundraise to Fight MS

Postby wide_load » Thu Apr 14, 2011 9:38 pm

I 100% agree with the support still being 100% worthwhile and I fully support your effort.

Again with the CCSVI, the same argument about it working for some and not for others could be used against lots of treatments that are readily available, at least in my mind. I believe if it shows signs/promise, and patients are willing to pay for it (and in greater amounts through venturing to foreign countries to gain access to it) then why not support it? I can understand not providing it under tax payers dollars without proof, but at least allow access to it in Canada. Just my view though :P
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Re: Help me Fundraise to Fight MS

Postby professor science » Thu Apr 14, 2011 10:34 pm

Yeah, I agree, but there still remains a lot of uncertainty in the process. I just wish the confirmation/trials phase proceeded quicker.

Just grabbed this from the National (US) MS Society page.
National MS Society research leaders also met with Dr. Zamboni in February (2010) in advance of his invited lecture at New York University’s Society-funded MS Center of Excellence. In meetings and during his presentation, Dr. Zamboni suggested that if further evidence supports the link between MS and CCSVI, that its treatment may ultimately add to the arsenal of therapies available for MS. He emphasized the need for more research on his hypothesis, and noted that it is still not proven whether CCSVI is a cause of MS or related to MS in some other manner. Dr. Zamboni also noted that people with MS should remain on their immunomodulatory therapies as has his wife after her endovascular surgical procedure.
So... sponsor me? :D
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Re: Help me Fundraise to Fight MS

Postby wide_load » Thu Apr 14, 2011 10:38 pm

I just bought a house :(... lol.

I'll see what the account feels like after we get news of our final payment this weekend :P
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Re: Help me Fundraise to Fight MS

Postby professor science » Thu Apr 14, 2011 10:39 pm

I know the feeling!
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Re: Help me Fundraise to Fight MS

Postby professor science » Sun Jul 17, 2011 11:37 am

27 sleeps to go!
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Re: Help me Fundraise to Fight MS

Postby professor science » Tue Aug 09, 2011 10:21 am

The ride's in 4 days!

Please get your donations in! :)

http://msofs.mssociety.ca/2011Bike/Sponsor.aspx?&PID=1273565&L=2
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Re: Help me Fundraise to Fight MS

Postby professor science » Tue Aug 09, 2011 1:45 pm

Thank you DW!
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Re: Help me Fundraise to Fight MS

Postby professor science » Wed May 23, 2012 10:46 pm

I'm doing it again this year. Looking at getting promotional kit for it too (speaking of... anyone want to design it for me?)!

Anyone want to join me?
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Re: Help me Fundraise to Fight MS

Postby professor science » Mon Aug 20, 2012 1:43 pm

This year is done again. Slightly longer than last year, 160k (90 and 75).

The weather started off cool, but finished up quite nice!

Leg 1: http://app.strava.com/rides/18971130
Leg 2: http://app.strava.com/rides/19071646

Anyone want to join in next year?
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