MS Canada responds to my concerns re: Competition

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

MS Canada responds to my concerns re: Competition

Postby bohemianbill » Fri Dec 11, 2009 3:08 am

By changing there Grant Guidlines

http://www.thisisms.com/ftopict-9231.html

When refering to the above thread you see that I sent the Society an email regarding my concern of the limit of 100,000c for the CCSVI research.

their response was to remove the following from Item 17 of the FAQ for Grant Guidlines.

Yesterday Dec 10,2009 it read
Item #17 FAQ

17 DO OPERATING GRANTS HAVE A MAXIMUM BUDGET/TIME PERIOD THAT CAN BE APPLIED FOR?

No, there is no maximum budget. However, the reveiw committee generally approves a grant for $100,000 CDN per year. New grants are usually funded for a maximum of two years; renewals are considered for three years.

This morning I am reviewing the Guidlines, Today Dec 11,2009 item #17 reads

17 DO OPERATING GRANTS HAVE A MAXIMUM BUDGET/TIME PERIOD THAT CAN BE APPLIED FOR?
The reveiw committee generally approves a grant for $100,000 CDN per year. New grants are usually funded for a maximum of two years; renewals are considered for three years.

<shortened url>

So it seems my concerns were adressed by removing the words

'No there is no maximum budget'

Thought you all would like the update, when & IF I receive a response from my email I will post. My only response to date is the following.

From: Carley Smith
Date: 10/12/2009 9:44:26 AM
To: Bill Larsh
Subject: RE: CCSVI 100 % Transparency-Attention Mr Savoie


Good Morning Bill,

I understand that you have been in contact with our AVP of Research here at the MS Society. She will be in contact with you shortly if she hasn’t been already.

Thank you so much for your email.

Carley Smith | Executive Assistant | Chief Development Officer's Office
MS Society of Canada | 175 Bloor Street East | Suite 700, North Tower Toronto, ON M4W 3R8
416.922.6600 ext.2249 | 1.866.922.6065
carley.smith@mssociety.ca | mssociety.ca | Join the movement at endms.ca!



Does anyone else find this disturbing?


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-keep the heat to the feet-
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Postby bohemianbill » Sun Dec 13, 2009 2:51 pm

Does anyone else find this disturbing?

Apparently not! But -I will keep putting the heat to the feet-

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Postby bohemianbill » Tue Dec 15, 2009 10:52 am

After requesting for a second time to respond to my emails the following is there response.

From: Bill Larsh [mailto:llarshllarsh@cogeco.ca]
Sent: Tuesday, December 15, 2009 9:17 AM
To: Carley Smith
Cc: msessex@bellnet.ca; MS Grants
Subject: Still no response

Goodmorning,

Carley, Yves, Karen, just dropping a note to inquire as to the length of time it takes to receive a response from the Society. I have asked for clarification on the Society's position regarding CCSVI research. The following are emails I have sent & to date I have received from Carlèy ``will be in touch soon email`` If you could please expidite a response It would be appreciated.

Bill Larsh


From: MS Grants
Date: 15/12/2009 1:40:45 PM
To: Bill Larsh; Carley Smith
Subject: RE: Still no response

Dear Mr. Larsh,

At this time all information regarding the request for research operating grants on Chronic Cerebrospinal Venous Insufficiency in Relations to Multiple Sclerosis is available online and no further information will be provided at this time.

Regards,

Karen Lee
Karen Lee, Ph.D.
Assistant Vice-President, Research
Research & Programs Department

_________________________________________________________________________________________

MS Society of Canada | 175 Bloor Street East | Suite 700, North Tower | Toronto, ON M4W 3R8
| www.mssociety.ca


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Postby C3Glo » Tue Dec 15, 2009 11:32 am

I wondered the same thing regarding the $100,00/ year amount ... that isn't enough to barely start the research ... I read it & laughed ... thought it was a bit of a joke! ... Hopefully there really isn't a maximum amount!
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Postby bohemianbill » Tue Dec 15, 2009 3:44 pm

C3 i agree it is a joke, especially when Buffalo is stating on this forum that its a 5,000,000 program.

C3 its been my research so far the 100.000c is all they intend to spend, My family & friends over the years have raised over 500,000 specifically for research, there was always debate on given it to the local but alas we felt the money needed to go were we could end this God forsaken disease, give it to research.

We have as a group spent thousands of hours making the effort to provide research dollars needed. ( anywere form car washes, coffee houses, Ms pasta dinners, Stage Shows) Now i find out that the MS Society is basically a puppet on a string and they simply write the cheque to whom they are told to. Does the Society realize that there fifedom is coming under a microscope.

I will end this thought this way, I have a brother in Hospice as i write this (probably will not make Christmas) another very deserving organization for our fund raising efforts.

The politicians, the society need to understand NOTHING stays the same either think outside of the box or BE REPLACED. I believe in all things CCSVI it is Common Sense, My/Our money will go there in the future. I am afraid we are beginning to think it will be to some other organization other than the society, !00,000 its an insult.

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Postby Vhoenecke » Tue Dec 15, 2009 5:13 pm

I guess too many people at the society would lose there jobs if this went through.
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Postby Miss_Feisty » Thu Dec 17, 2009 1:04 pm

Sorry, I haven't yet done my research....but are the society's financial statements public?

The situation doesn't make sense. The MS Society is a good organization, I'm tired of seeing such negativity surround what is suppose to be the "middleman or go between" to learn about the disease and create awareness.

It's hard not to shake your head, wondering why the CCSVI research isn't cradled in the society's arms. They have an amazing opportunity here to embrace the research with a positive flare and become hero's by supporting the recent findings.

I am a little disturbed that they are not providing information about the CCSVI research. They should have more for the public and should be interested in providing that service. Isn't that what they are all about?

This whole situation again is very odd, from the reaction of neuros, ms societies and doctors. Zamboni really sent the world a flying...bless his heart. I am so proud of all my ms brothers and sisters and families who won't take no for an answer.

There is POWER in NUMBERS.......keep it up.
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Postby Miss_Feisty » Thu Dec 17, 2009 1:11 pm

MS Society of Canada

How funds are raised & spent
http://www.mssociety.ca/en/community/mssc/default.htm

For a copy of our audited financial statements, please call 1-866-922-6065.
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Postby happy_canuck » Thu Dec 17, 2009 3:21 pm

I think researchers must look to supplement funds through corporate and private donors, on top of what they get from the society. I heard the UBC docto (Traboulsee) say they were looking at a million needed for their CCSVI project.

*sorry to hear about your brother, bohemianbill. peace to your family*
National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />
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Postby bohemianbill » Fri Dec 18, 2009 3:07 am

happy--thankyou for your thought's

-the following is a recap thread thats dropped off the first page.

http://www.thisisms.com/ftopict-9320.html

-keep the heat to the feet-

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