SuperWalk extends reach online

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This past September, 13,000 Canadians in more than 80 communities laced up their running shoes, filled their water bottles, and came out in support of the 18th annual SuperWalk for Parkinson’s. They raised $2.4 million for Parkinson’s research and support programs for Canadians living with Parkinson’s.

A staggering $1.1 million was raised through Internet pledges, with resourceful walkers soliciting donations from as far away as Scotland, South Africa and Australia. “The beauty of the online system is that we’re able to get donations from around the world and tap into a broader network of people,” says Beverly Crandell, Parkinson Society Canada’s National Director for Resource Development.

The next SuperWalk takes place on September 12-13, 2009.

It’s a family affair

Kenny Bearg begins his annual fundraising drive every July and makes sure he’s up to the physical demands of the SuperWalk by going to the gym every day at 6:30 a.m. Since he was diagnosed with Parkinson’s in 2003, at the age of 51, Kenny has not missed a single SuperWalk. He has raised about $250,000 over the past six years.

Even as he juggles the demands of a successful business and a busy life, Kenny makes SuperWalk a priority and a family event. “This year, my eldest daughter and my two grandchildren walked with me and we really enjoyed it,” says Bearg. “Last year, my youngest daughter walked in the Parkinson’s event in New York.”

Kenny says he and his family walk to show solidarity for Canadians affected by Parkinson’s. “When I was diagnosed, I called Parkinson Society Canada,” recalls Bearg. “I am forever grateful for the help and support I received. I’ll keep walking in SuperWalk and raising money. I’m fighting this the best way I can and I feel good about it.”

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New collective generates big research investment

Parkinson Society Canada’s leadership, in bringing neurological charities together, has resulted in the establishment of Neurological Health Charities Canada (NHCC), a new collective of 15 organizations that represent Canadians with chronic, often progressive, brain diseases, disorders and injuries.

NHCC’s role is to provide leadership, evaluating and advancing new opportunities for collaboration specific to advocacy, education and research projects, related to brain health. The collective is already having an impact.

The Conservative Party of Canada has agreed to provide $15 million for a four-year study of Canadians with illnesses such as Parkinson’s disease. NHCC members will work with the federal government to develop the framework for the research program.

The Ontario Government has committed to working with the NHCC, during the coming year, to develop a provincial neurological strategy, which may serve as a model for other provinces.

For more information on the NHCC, visit www.neurohealthcharities.ca.

NHCC Members:  ALS Society of Canada, Alzheimer Society of Canada, Canadian Neurological Sciences Federation, Epilepsy Ontario, Huntington Society of Canada, March of Dimes, Mood Disorders Society of Canada, Multiple Sclerosis Society of Canada, Muscular Dystrophy Canada, NeuroScience Canada, Ontario Federation for Cerebral Palsy, Ontario Neurotrauma Foundation, Parkinson Society Canada, Spina Bifida and Hydrocephalus Association of Ontario, Tourette Syndrome Foundation of Canada. 
 

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Members of the NHCC met with Canada’s Minister of Health, June 2, 2008. From L to R: Kent Bassett-Spiers, Ontario Neurotrauma Foundation; Catherine Sherrard, Muscular Dystrophy Canada; Scott Dudgeon, Alzheimer Society of Canada; The Honourable Tony Clement, Minister of Health; Yves Savoie, Multiple Sclerosis Society of Canada; Jo Anne Watton, Huntington Society of Canada; Joyce Gordon, Parkinson Society Canada; Derryn Gill, Spina Bifida & Hydrocephalus Association of Ontario; Dr. Christina Wolfson, Neuroepidemiologist, McGill University; Inez Jabapurwala, NeuroScience Canada; and, Rosie Wartecker, Tourette Syndrome Foundation of Canada.

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Telemedicine improves access

Telemedicine improves access for people with Parkinson’s

Almost every afternoon, Dr. Mark Guttman closes his office door at the Centre for Movement Disorders clinic in Markham and turns on the TV. The waiting room may be empty, but he still has patients to see – via the Ontario Telemedicine Network.

Dr. Guttman describes how it works: “The patient and family go to a local hospital and enter one of the videoconferencing suites. The coordinator at the other end, usually a nurse, helps with the evaluation and handles the equipment. I am in my office. I can see the patient and the patient can see me. We have a conversation. Then I ask the nurse when it’s time to help with the physical examination.”

Using the high-resolution camera, Dr. Guttman can zoom in for a close-up of the patient’s symptoms. He says, “In Parkinson’s, it’s important to watch somebody to observe their speed of movement, their muscle tone and how they’re walking.” Also on hand are the latest tele-diagnostic instruments, such as, digital stethoscopes and digital imaging facilities that transfer information to the doctor.

Videoconferencing is enabling people with Parkinson’s disease in Ontario’s remote communities to access neurologists, like Dr. Guttman, without the time and expense of travelling to larger urban centres. “Some people were driving from Thunder Bay to see me. That’s 14 hours each way for a follow-up assessment that lasts 20 minutes,” says Dr. Guttman. “Now they just go to the local hospital and it’s so much easier.”

Dr. Guttman sees about 12 patients a week or 500 a year, in this manner. Over 90% of these patients have expressed satisfaction with the care they have received. The program is so successful that Dr. Guttman is installing a second videoconferencing suite in his clinic. 

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Dr. Mark Guttman

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What’s new in Parkinson’s disease medications?

Azilect® reported to have potential to affect progression

On August 26, 2008 a news release issued by Teva Pharmaceutical Industries Ltd., manufacturers of the drug, Azilect®, reports that the results of the ADAGIO phase 3 trial indicate that early treatment with 1 mg of Azilect supports the potential for Azilect to have an effect on the progression of Parkinson’s.

The news release was issued at the 12th Congress of European Federation of Neurological Societies in Madrid, Spain. The data have yet to be published in a peer-reviewed journal.

Since 2006, Azilect® has been approved by Health Canada for treating Parkinson’s symptoms, however the only provincial drug plan that provides coverage is Quebec. The medication may be covered under private insurance plans

Stalevo now covered under Quebec drug plan

As of October 2008, Stalevo has been approved and is now available in Quebec. The Common Drug Review (CDR) has recommended that it also be listed in other provinces. The medication may be covered under private insurance plans. 

Stalevo Information Sheet English

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PSCs national ad campaign hits home

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A man is sitting in an armchair in his living room when he hears the phone ringing in the kitchen. He rises apprehensively from his chair to make his way to the telephone. Suddenly, he is tackled by an intruder who physically prevents him from getting to the phone. Books, plates and chairs come crashing down around him as the telephone continues to ring and he struggles to get to it. Terrified, he looks into the face of his attacker and sees himself – his own body is wrestling with him, keeping him from doing the simple task of getting to the phone. Nothing’s easy when your body turns against you.

A woman sits at her kitchen table with a steaming mug of coffee in her left hand. Her despondent gaze, however, is focused on her right hand holding a creamer filled with milk. The look on her face says it all. “How am I going to pour this milk into my coffee?”  She knows this everyday task is going to present insurmountable challenges for her as her hands multiply to four and take a firm grip on her right arm, preventing her from adding milk to the now lukewarm mug of coffee. Everything’s harder when your body turns against you.

These two images are from a provocative national ad campaign themed, “Everything’s harder when your body turns against you,” which Parkinson Society Canada launched in April 2008. Designed to convey the struggle that people living with Parkinson’s disease (PD) experience daily, the controversial vignettes were created by TAXI 2, one of the top ad agencies in Canada.

The goals of the campaign were to show the world the daily reality of the over 100,000 Canadians living with PD, in a way that people could understand, and to dispel the myths that surround the disease. The campaign also sets the stage to raise much-needed funds for research and support services.

Gaggi Media, a media planning agency, secured pro-bono air and print space for the ads which appeared on television, social media networks, billboards, physicians’ office TV screens, the Globe and Mail, industry and mainstream magazines, and websites such as Google, Facebook, Yahoo and YouTube.

Public response to these hard-hitting images was overwhelming and led to increased visits to www.parkinson.ca during the campaign. The ads were also rated as one of the top 10 ads on the Internet during April.

This thought-provoking campaign was created in collaboration with hundreds of Canadians with PD who shared their insights and experiences with the creative team to ensure powerful messaging that was genuine and truthful. Life can be a hard reality for those living with PD. Through these ads, PSC hopes to generate greater understanding and support.

To view the ads, visit www.parkinson.ca and click on Media Centre.

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