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Monday, April 18, 2011 7:34 AM | Ken Torbert Volg link

Geanine Piacenti doesn't need any scientific evidence to convince her that a controversial medical treatment is helping improve her multiple sclerosis symptoms.


Instead, the St. Catharines woman is putting her trust in the way she feels.


A week after returning from California where she spent more than $10,000 of her own money on so called "liberation therapy," Piacenti was at Sunday morning's MS St. Catharines-Thorold Walk.


As several hundred people set off on the fundraising walk through the north-end of St. Catharines, Piacenti said she's convinced she's already begun feeling benefits from the procedure.


"I'm walking much better. My coordination's much better. Things are really starting to look much better. I'm encouraged," the 57-year-old said.


Sunday's walk came just days after a study out of the University of Buffalo couldn't conclusively link clogged neck veins — a condition called chronic cerebrospinal venous insufficiency (CCSVI) — and the build up of iron they can create as a root cause of MS.


Instead, the study suggested it's possible the condition may in fact be a symptom of MS rather than a trigger for the debilitating disease.


Liberation therapy — a surgical procedure in which affected veins in the neck and head are opened up through angioplasty — has been the talk of the MS world since it was pioneered two years ago by Italian doctor Paolo Zamboni.


The treatment is not funded anywhere in Canada presently, which has prompted many MS sufferers to head south of the border to get it and foot the medical bills themselves.


The MS Society of Canada has committed to spend hundreds of thousands of dollars into research of CCSVI. The organization and its U.S. counterpart announced last summer they will spend $2.4 million together on clinical diagnostic studies.


The Canadian organization has set aside a further $1 million in a reserve for a Canadian therapeutic trial and is lobbying the federal government to support the trial with $10 million.


Piacenti said she'd be glad to serve as a "guinea pig" for any researchers.


"If the Canadian government would only fund (liberation therapy), it would make it easier for a lot of people," the former nurse at Hotel Dieu Hospital said.


"I think they should send the people for the procedure and then use that as the research."


It's events like Sunday's walk — and similar ones held in communities across the country —that help fuel vital research needed into MS and potential therapies, such as CCSVI treatment, said walk co-ordinator Adam O'Neill.


"There's a lot unknowns, but we're doing what we can to do research to get to the bottom of it," he said.


More than 600 people registered for the walk, but an exact count of how many actually braved the high winds and low temperatures wasn't available Sunday morning.


"I think (the turnout) was great," O'Neill said. "We were really worried about the weather. Even though it's cold, we have a lot of people who've come out."


Organizers are hoping the 18th annual event will raise at least $162,000 for research and services to help those dealing with MS. A final tally won't be know for about a month until all pledges come in, O'Neill said.


Walkers headed out from the Grantham Lions Club in the north end of St. Catharines on routes of two, five or 10 kilometres.


Among the large group was Sandy Cook of St. Catharines, who has deal with MS for more than 30 years.


Cook, 55, was joined by sister Anne-Marie Brunet, parents Don and Rosaleen Watts and her aunt, Pat Langille.


The family has entered a team every years since the event began.


"The support itself and all of the fun we have doing it just makes me feel so loved and very supported," Cook said.


Manny LeFrancois of St. Catharines said he was walking for wife Anne, who was diagnosed with MS 15 years ago.


"I do it for her and I do it for all the people who have MS," he said.


http://www.stcatharinesstandard.ca/ArticleDisplay.aspx?e=3078963