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I want you to tell me how you will endMS

November 12, 2009 Michael AugustineLisez en Francais

You know what? It’s about time you hear a different voice.

This of course is my endMS blog, so it focuses on my contributions toward the fight to end MS. But I want to hear what you are doing to end MS. I want you to share some of your inspiring stories with our fellow Canadians. So here’s my challenge to you:

Publish your story on the endMS scrapbook, and let us know your one-of-a-kind endMS story that will serve to inspire and motivate others.

Tell me exactly why you want to end MS, and who or what gives you the hope to make it happen.

Here’s your chance to have your voice heard. Here’s your chance to say: I will end MS!

Irreverently Yours,
Aug

 

Technorati tags: endMS, multiple sclerosis, scrapbook

Posted in endMS Campaign | Permalink | Have your say: 8 Comments

Comments

From  Kimberly G.  on  November 23, 2009
I have been following CCSVI for several months now. This week I should be getting examination of my internal jugulars and azygous veins. Thanks to recent news and CTV's W5 exposure, my Drs will be more willing to take action. They are usually very supportive but there have been so many blind alleys to travel before and they are wary. I hope there's some light at the end of this one,
From  Rescuenuggife  on  November 26, 2009
Unadulterated words, some true words dude. Totally made my day!
From  MSGirl  on  December 21, 2009
I am outraged that the drug companies were able to keep Dr Zamboni's work quiet for so long. I have heard now, they have pressures the Italian govt to shut down Zamboni - he is no longer able to do the procedure. Multi billion dollar pharmaceutical industry can determine whether us suffers will get better or not. People need to speak out loudly and pressure the govt to do what is right!!!
From  josef  on  January 15, 2010
I am an MS patient, and a member & donor of the MS Society. It really baffles me how reactive the MS Society in Canada is. Just take a look at any other MS society ....at how proactive, vibrant, flexible, nimble, open to ideas... how they respond to and involve their members. Take for example the National MS Society http://www.facebook.com/nationalmssociety?ref=nf Yes thank you MS Society of Canada for calling for research on CCSVI but after what ??? after thousands and thousands of email and phone calls to Yves Savoie, to minister of health, after so many cries while the rest of the world is way ahead of us. I am thankful to our government for investing the money in research and trying to regulate the funding through societies but the system in place does NOT reward the breakthroughs that will someday lead to a cure! The system in place is only to care for ms patients - which is great do not misunderstand me- but if we need someone to arrange for wheeltrans and sandwiches and book rooms to talk and no action we could do it ourselves! Please MS Society of Canada, stop being the advocate and spokesperson of drug companies and start being a proactive institution that rewards innovation and will shine the way other Canadian institutions shine around the world! Just think of the ctv report and what it did! The big question remains, everyone knew about this CCSVI EVERYONE but no one dared to talked about it in Public!!! WHY ? Ask yourselves. Thank you for reading my post and I wish us all well and good health.
From  Concerned  on  January 17, 2010
I thank the MS Society of Canada for adjusting their research application timeline recently to include applications for CCSVI research proposals. HOWEVER, during my fundraising efforts at this time will be focussed on re-directing annual donations directly to the researchers (BNAC, Dr. Haake, etc.) to ensure they receive immediate funding for their work. I also suggest that others in the MS Community to the same. I would like the MS Society to report back to the MS Community in June / July to advise on who has received research money, how much, and the subject of the research. Disappointingly, the MS community is relying on websites other than the MS Society to monitor information abailable regarding CCSVI developments. Kudos to CTV for informing Canadians, and persons around the world of the subject of CCSVI in MS. Shame on the MS Society if you do not sufficiently fund immediate research into CCSVI.
From  josef  on  January 19, 2010
If you really want to make a difference organize in local groups and spread awareness and interest in ccsvi. I invite anyone around the Montreal area to join our group: http://www.facebook.com/group.php?gid=272147049088
From  unlalmutesilt  on  February 11, 2010
i honestly adore all your writing way, very exciting, don't give up as well as keep creating since it simply just well worth to look through it, looking forward to look into additional of your current content, thanks :)
From  WomanInTheWhiteCoat  on  February 22, 2010
I am a researcher. I have dedicated my work to helping endMS. I do not work for "BigPharma" and I am not some out-of-touch person in a white coat. In fact, if we happened to meet at an MS Society event, you would realize that I am just like most of you: I donate my hard-earned money to the MS Society and am very committed and passionate about ending MS. Every MS researcher I know wants to see the end to MS; we are committed to being a part of that process. As such, we are committed to doing our "due diligence" with all potential MS causes and treatments, including CCSVI. It takes high-quality, rigorous research to yield high-quality results. The MS Society has supported CCSVI research in an unprecedented way so that this research can be done. We all - researchers and the MS Society, too - want to see an end to MS. And we all want to see it as soon as possible! Sadly, many people take advantage of desperate people to make money or fame; a quick internet search yields many supposed "secret" treatments and "cures" for MS - but most are 'snake oil' (aka expensive placeboes) that are only available for outrageous prices, and yet they lack any scientific backing. Some, sadly, are outright dangerous. But desperation can drive desperate acts. Unfortunately, the tone, content - and outright hostility - of some of the comments on this board reflect the misinformation about CCSVI. These things also reflect the understandable emotion and desperation behind the intriguing but as-yet-unsubstantiated/poorly defined CCSVI research in MS. Now, I am not saying that CCSVI is "snake oil". Rather, researchers know that rigorous study is needed to evaluate the bold CCSVI claims that, quite frankly, have been blown out of proportion by the media. Please inform yourselves about the reality of the current state of knowledge - and lack thereof - about CCSVI. Here is some great information about what the MS Society and MS community are doing about CCSVI: http://www.mssociety.ca/en/research/medmmo_2009102 The MS Society has supported CCSVI research in an unprecedented way. We - the folks in the white coats - will also continue to do strive to do the highest quality research to endMS as quickly as possible. If we let hype and irrationality divide us, we all will lose. It takes a team - to support the research and to conduct the research. Divided we will fail but together we will endMS. (NOTE: I have no conflicts of interest. I am not personally funded by the MS Society. I do not have any affiliations with any pharmaceutical companies or other MS organizations aside from the fact that I regularly donate to the MS Society of Canada).

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