Positive media results...Canadian content...

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

Positive media results...Canadian content...

Postby PCakes » Wed Mar 10, 2010 11:16 am

Surfing CCSVI and came across the following link ... http://charityintelligence.ca/pdfs/Ci_C ... laimer.pdf
Skeptically curious.. I sent off an e-mail asking two questions.. 1) How might their efforts support CCSVI? and 2) at what cost?
I am pleased to report that I received a very supportive and promising reply including ..C.I. is a volunteer group of 20 Canadians, mostly from the investment world, wanting to "give back" by assisting potential corporate and individual donors in making informed donation decisions. Included was a copy of a recent C.I. submission to The Globe and Mail that I have permission to share...

Submitted to the Globe and Mail – February 11, 2010

Donors have the power to get MS research underway.

The Globe and Mail reported Buffalo’s preliminary but promising results on MS research adding further evidence to the existence of blocked veins in people with MS. The discovery of Dr. Zamboni continues to gain merit. Two years ago his published report based on his findings sparked a new avenue of research into MS, which only continues to gain momentum.

Dr. Zamboni’s findings, known as Chronic CerebroSpinal Venous Insufficiency (CCSVI), show that MS may be triggered by a ‘plumbing problem’ rather than the auto-immune theory pursued for the last 60 years. When veins in the neck are blocked or constricted, blood is pushed back up into the brain, perhaps causing the inflammation and brain lesions seen in people with MS.

This contrarian idea is naturally raising eyebrows. Could this devastating disease that affects and estimated 1.5 million people worldwide be related to such a common sense idea? And if so, the treatment of angioplasty could offer the first possibility of remission for some symptoms of MS.

The medical establishment is legendary in its resistance to new ideas. The trials of Dr.s Marshall and Warren from Australia have become well known. Dr. Marshall, an unknown pathologist, and Dr. Warren, then a medical intern, made the medical breakthrough that stomach ulcers were not caused by stress or spicy food, but rather by bacteria. After four years of unsuccessfully battling the establishment, Dr. Marshall drank a toxic potion, giving himself stomach ulcers and then took his cure to prove antibiotics were effective. Ten years after the discovery, antibiotics became the recognized treatment ending suffering for millions of people. Subsequently, researchers re-examined bacteria’s role in medicine, finding new roles played in heart disease and cancer.

Skeptics tell Canadians with MS to wait and be patient for more work to be done. Yet MS is a progressive disease leading to permanent brain damage and disability. It is the most common neurological disability affecting young adults. Most people with MS are diagnosed between age 20 and 40. Within 10 years of diagnosis, 70% can no longer work. Disability payments and health care costs for MS add up to $1.1 billion each year in Canada. Time is a luxury people with MS don’t have.

Is it any wonder thousands are requesting ultrasounds of their necks, volunteering to be guinea pigs to be a part of the advancement of knowledge that so directly impacts them?

This is a most exciting time for MS research. This could be one of those rare leaps forward in science. After decades of minor incremental steps in treatment, this is a glimmer of hope for some with MS.

CCSVI is a legitimate scientific theory that merits funding for further investigation and evidence. Yes, this is just the beginning. Yes, more work needs to be done. Yet nothing is happening in Canada for want of $1.5 million in funding.

Two preliminary and rigorous studies into CCSVI will cost $1.5 million. UBC in collaboration with the University of Saskatchewan is seeking $1 million, with less than$10,000 received to date. The St. Joseph Healthcare and McMaster initiative in Hamilton requires $500,000. With this funding it could be up and running within two weeks with results by year end. The MS Society of Canada may award each of these initiatives $100,000 in June 2010.

The power to get CCSVI research underway is in the hands of Canadian donors. Canadians care about MS. Last year Canadians gave $62 million to charities working in the MS sector. Donors can bypass the skeptics by donating directly to Canada’s research institutes waiting to get started.

Donations should be made to St. Joseph’s Healthcare in Hamilton and UBC Faculty of Medicine, specifically restricting donations for CCSVI research. This direct route is fastest and most cost-efficient.

Has there ever been a time when $1.5 million in donations can achieve such high impact – a legacy perhaps similar to underwriting Banting and Best, advancing medical knowledge, and potentially bringing us closer to ending MS?.


Respectfully submitted


Kate Bahen, CFA
Managing Director
Charity Intelligence Canada
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Postby Ruthless67 » Wed Mar 10, 2010 5:41 pm

Pcakes,

What a GREAT FIND!!!! Lets keep this bumped up at the top of the forum.

This is starting to get REALLY EXCITING!!!!!!

Lora
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Great info!

Postby fiddler » Wed Mar 10, 2010 7:32 pm

Thanks, PCakes, a great initiative... and an easy way to donate to good causes.

Although in the end I didn't need it because he was very supportive, I could have used that CCSVI in Canada PDF to take to my GP today when I went to talk to him about my impending trip to Poland. They did a great job with that.
...Ted
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Postby PCakes » Wed Mar 10, 2010 9:04 pm

Hi..yes..and the e-mail I received was very supportive and knowledgeable of CCSVI, the proposed trials and research!

I will be happy to do the 'bump'ing if you let me know how to do it? :)
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Postby Cece » Wed Mar 10, 2010 9:17 pm

Thanks for some clarity on the Charity Intelligence group. Their name was mentioned here a few weeks ago but it wasn't clear who they were or what they had to do with anything.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Charity Intelligence

Postby fiddler » Thu Mar 11, 2010 6:05 am

PCakes, to "bump" the posting, it's simply a matter of adding a new posting to it once in a while (like this will do).

By the way, after I donated last night, I received an e-mail asking how I would like my donation split between the two (UBC and McMasters) CCSVI initiatives that Ci is currently backing. I used it as an opportunity to ask them what motivated them to look into it and produce that excellent report. I'll let you know what they tell me.

...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Reply from Charity Charity Intelligence

Postby fiddler » Thu Mar 11, 2010 1:20 pm

Folks, this is a great endorsement for CCSVI research by the folks at Charity Intelligence:
Thanks Ted.

Charity Intelligence works for private funders - mostly individuals but also private foundations and corporations - helping them give. As you know, navigating the Canadian charitable landscape, trying to figure out good spots for donations can be a challenge.

The client who initiated the Ci's research into CCSVI is anonymous so we are not at a liberty to disclose the background.

However, we too out of curiosity had read the Globe and Mail article back in November and wanted to check this out - was it a hype/hoax? What we found we believe is the biggest giving opportunity we have ever seen.

As investment professionals who volunteer with Ci we look at donating through a different lens. We seek out opportunities where donations can have high social returns. In the CCSVI field, we estimate that for every $100 donated, this could produce social returns of $3,000. This is like underwriting Banting and Best - a historic donating opportunity.

We believe today more than back in February that CCSVI is the real thing - not all people with MS may have CCSVI but for those that do, this is the medical breakthrough that will redefine how MS is diagnosed and treated.

Now the challenge at hand is to get CCSVI happening in Canada. The amounts required to do this are so relatively small - $1.5 million - of which your donation is part. "It is our small streams of contributions that have the potential to fill expansive oceans."

Canadians care very much about MS. Last year Canadians donated $62 million to charities in the MS sector - yet 100% of the $8.5 million in research funding has gone to the auto-immune area and there is inadequate interest in getting CCSVI trials funded. If a small portion of Canadian’s donations can be redirected to CCSVI, we can get the Phase 1 trials funded and underway....and then people like you wouldn't have to travel to Poland!

So we have set up a mechanism where donations can go exclusively, 100% to CCSVI Phase 1 trials..... Canadian donors have the power to make this happen.

At Ci, all our team care passionately about Canada. Canada has a huge competitive advantage in the CCSVI area because of the extraordinary journalism of CTV - we are ahead of many other countries in terms of public awareness. Sadly, this advantage is not being maximized. Canada has the doctors, the machines, the will to do CCSVI research. Yet until they get the funding, nothing happens. And rather than being a world destination for others with MS to come to Canada for treatment, Canadians are going to Buffalo and Poland.

It will be a long battle to move the medical establishment but science will prevail - it's just a question of time, and time is a luxury people with MS don't have.

I would be very interested in hearing the outcome of Poland. Safe travels and please keep in touch. And thank you again for your leap of faith in donating through an upstart charity you have never heard of before. We promise we'll deliver your donation as per your giving instructions as quickly as possible.

Kate.
Last edited by fiddler on Thu Mar 11, 2010 2:18 pm, edited 1 time in total.
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Postby PCakes » Thu Mar 11, 2010 2:08 pm

Every day with every step.. the 'when' gains strength while the 'if' fades ... It feels good to shake the hands that reach out... :)
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Postby magoo » Thu Mar 11, 2010 4:32 pm

Very EXCITING!!!!!!!!!!!!!
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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