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Voice T h e July 2012

MS Bike Tour

Join the largest cycling series in North America, the MS Bike Tour. The Tour takes place on Saturday, July 28 to Sunday, July 19, 150 km from Grand Bend to London. Beginning at Lake Huron in Grand Bend, you will cycle along quiet rural roads to Western University in London for an over-night stay. Enjoy a fun evening of dinner, dancing and prizes with your fellow cyclists.

The next morning, cycle back to Grand Bend for a well-deserved massage and finish line barbecue. Register at msbiketours.ca or by calling 1-800-268-7582.

MS Bike Tour 1

Client Services, Impact Report 2

Online learning, Cruisin’ for a Cause 3

New research portal 4

Cancer risk in MS 5

National Board of Directors 6

Renewal Initiative update 7

Bingo Night and Chapter calendar 8 In T

his

Issue

MS Society, London / Middlesex Chapter

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Client Services A message from the new Manager of Client Services – Christine Williams My name is Christine Williams and at the beginning of June I joined the MS Socie-ty London/Middlesex Chapter as the new Manager of Client Services. I understand that this role has grown over the years; although, it has always main-tained a focus on supporting clients. With keeping this main focus on client support, I will be able to fully utilize my years of experience from the fields of nursing, social work and management. I embrace an open door policy, so please feel free to drop by, call or send me an email. I look forward to developing long term connections with everyone. Look-ing forward to a great 2012! Caregiver Connections Group If you are a caregiver of someone who has MS and would like to connect with

others, we are starting a Caregiver Connections Group in the fall. Please contact Christine Williams at the MS So-ciety to sign up – email to Chris-tine.williams@mssociety.ca or phone at 519-646-6030. Support Group Support Group will run through the sum-mer on the first Wednesday of the month at 10 am to 12:30 pm. If you are interested, please contact David at daverudko@gmail.com. Tips from Members Are you interested in sharing helpful tips with other members? For example, shar-ing that Ginkgo Biloba helps with memory. Please forward your helpful tips to Dawn at dawn.edwards@rogers.com. These tips are not meant to be medical advice.

NEW - MS Society National Impact Report People living with MS are at the centre of our work. The National Impact Report explores the MS So-ciety’s achievements in serving those touched by MS.

Read the report at http://mssociety.ca/en/community/mssc/annualreport.htm.

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A&W Cruisin’ for a Cause

In the summer, MS Society supporters have gathered at local A&W restaurants to enjoy teen burgers, classic cars and entertainment, helping to end MS.

Since 2009, A&W Cruisin' for a Cause has raised more than $2 million to help fund groundbreaking research and pro-vide vital services across the country for the 55,000-75,000 Canadians living with MS. In 2011 alone, more than $1 million was raised — this year, we're setting our sights even higher! Drop by your local A&W restaurant on Thursday, August 23, 2012 to support Cruisin’ for a Cause Day! You can also make a secure contribution today by visiting http://www.cruisinforacause2012.ca/.

View the “Navigating the MS Maze” session

This education series focuses on providing information to people living with MS in navigating the myriad of options today, including medications and treatment, symptom manage-ment and wellness strategies. The Expert panel discusses current treatment options and information on where and how people impacted by MS can seek and obtain credible in-formation to assist them in better managing their MS. The session also provides valuable in-

formation on how to make informed decisions about MS and what new therapies are expected to be in the marketplace within the coming months.

View the ―Navigating the MS Maze‖ session that took place in Ottawa fea-turing Dr. Mark Freedman at http://mssociety.ca/en/help/nes_ms-maze.htm.

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MS Research Portal is a recent initiative from the MS Society of Canada’s Re-search and Client Services departments to highlight research studies that are seeking participants. These studies are not related to pharmaceutical compa-nies but are supported by the MS Socie-ty of Canada or other recognized fund-ing agencies that have formal peer re-view processes. What are the benefits?

The MS Research Portal is a central resource which provides information about Canadian MS research in a clear and easily understandable format.

By providing this information to peo-ple with MS, we hope to raise aware-ness of MS research efforts in Canada to improve recruitment and retention to research projects.

This information will help people with MS decide whether they want to partici-pate in a research trial, and if they are eligible.

What information is included on the MS Research Portal?

A summary of quality of life research projects seeking participants with MS in Canada.

Description of the research project and/or trial.

Recruitment start date and estimated closing date of the project/trial.

Key eligibility and exclusion criteria.

Canadian location(s) of the research project/trial.

Chief investigator of the trial and/or the organizations funding, supporting or managing the projects/trials.

Contact information of research coordi-nator for prospective participants.

All studies that are currently seeking participants have been sorted based on the drop down list of provinces below. To get involved, please visit http://msresearch.ca/.

New MS Research Portal

endMS Car Magnets for sale The endMS car magnets are now available for purchase at the Chapter office for $5 each. To purchase in support of the MS Society, call at 519-646 6030.

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Cancer risk in MS: Findings from a UBC study

Summary Supported by the MS Society of Cana-da, the Canadian Institutes of Health Research and the Michael Smith Foun-dation for Health Research, a research team from UBC conducted a large Ca-nadian retrospective cohort study to compare the incidence of all cancers and specific types of cancers following onset of MS. F indings from this study suggest that the overall cancer incidence, especially colorectal cancer, in people with MS was lower in both males and females and in both relapsing-remitting and pri-mary progressive MS as compared with the general population. [Elaine King-well, Chris Bajdik, Norm Phillips, Feng Zhu, Joel Oger, Stanley Hashimoto and Helen Tremlett. Brain (2012) doi: 10.1093/brain/aws148. First published online: June 21, 2012] Details UBC researchers conducted a large ret-rospective cohort study using linkage of prospectively collected data from population-based clinical and adminis-trative databases in British Columbia from the province’s MS clinics, Cancer Registry, Ministry of Health’s Registra-tion and Premium Billing Files and the British Columbia Vital Statistics death database to compare the incidence of

all cancers and specific types of can-cers following onset of MS. A total of 6917 eligible cases were identified from the British Columbia multiple sclerosis cohort and followed for an average of 16 years. Of these, seventy two per cent were female and twenty eight per cent were male. Eighty nine per cent had a relapsing course at onset, while ten per cent had primary progressive MS. One per cent had an unknown clinical course. The researchers reported that the over-all cancer incidence, especially for colo-rectal cancer, for persons with MS was lower than expected as compared with the general population. This reduced risk was consistent in females and males and in both relapsing-onset and primary progressive MS. Only non-melanoma skin cancer risk was in-creased and this was observed only in people with relapsing-onset MS. The researchers found evidence to sug-gest that diagnostic neglect might con-tribute to the apparent reduction in cancer risk in multiple sclerosis. Their findings indicate that the potential for diagnostic neglect of cancer requires further attention by patients, physi-cians and researchers.

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National Board of Directors 2012/2013

The affairs of the MS Society are man-aged by the national board of directors. More specifically, the board is mandat-ed to make, monitor and amend na-tional policy decisions relating to all levels of the MS Society; provide overall strategic direction and monitor strate-gic progress; approve the annual con-solidated budget; monitor and approve financial statements; oversee the work of the president and chief executive of-ficer; and make investment decisions at the national level.

Many members of the MS Society's board of directors have MS or have loved ones with MS. The quality of the oversight provided by the board hinges on these important perspectives and many others. The MS Society values and protects the privacy of people with MS. In this spirit, we do not require our volunteers to disclose whether they have MS or have loved ones with MS.

Message from Jim Casey, chair of the national board of directors As a new term for the board commenc-es, it is appropriate to reflect and be thankful for the progress that has been made in the past year on our journey to end MS. I would like to thank all members of the MS community for their contributions in advancing the MS cause. People living with MS, caregiv-

ers, volunteers, donors, staff, health professionals, researchers and of course our members, deserve recogni-tion for what has been an extraordinary period of hope. Consider the following:

$3.8 million invested by the MS Society of Canada in a study that may have special relevance for those living with progressive forms of MS.

Near completion of the $60 million endMS campaign that funds MS re-search while at the same time, at-tracting, training and retaining the next generation of MS researchers.

A commitment to launch a Phase I/II clinical trial of CCSVI and MS, pending ethics approval, that will bring us closer to conclusive answers on this important issue.

After a five year lobbying effort led by the MS Society, approval by the federal government to recognize spousal eligibility for the Caregiver Tax Credit.

In 2011, we experienced lower reve-nues on an overall basis on account of continuing global financial uncertainty. Fortunately, the outlook for 2012 and beyond looks stable. At the same time, I know the staff team at the MS Society proactively seeks ways to improve our revenue outlook in all programs while keeping costs down. report of recom-mendations to the board this fall. Continued on page 7

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Renewal Initiative The MS Society of Canada is in the midst of an organization‐wide process

to discover better ways for us to achieve our mission of being a leader in finding a cure for MS and enabling peo-ple with MS to enhance their quality of life. As always, people living with MS are at the center of all that we do.

The Renewal Initiative began in Sep-tember 2011. With hundreds of individ-uals and groups consulted in phases 1 and 2 of this process, we now enter the pivotal phase 3 where we hone in on a vision for the MS Society of the future. Bold ideas have been presented. The Phase 3: Renewal document is availa-ble at http://mssociety.ca/en/community/mssc/Renewal.htm. The Renewal Initiative will include op-portunities for your input and we look forward to hearing from you. Please stay tuned for details and for periodic updates on the Renewal Initiative. Questions? Email renew-al@mssociety.ca.

National Board continued from page 6 On that front, I’m pleased to see that the Renewal Initiative taskforce, charged with finding ways for the MS Society to more effectively deliver on its mission, is scheduled to submit its report of recommendations to the board this fall. Finally, I would like to extend a warm welcome to our new board members: Charles Ford, John Folka, Brian Duck, Jennifer Moszynski, and Carey Mog-dan. I also would like to thank de-parting board members Robert Deck-er, Marilyn Lenzen, Brian Lerner, Eu-gene Paquin, and James Orr for their committed service to the organiza-tion. It has been a privilege to work with these remarkable individuals and I thank them for sharing their knowledge and wisdom in support of the MS cause. Sincerely, Jim Casey, Chair, National Board of Directors

Change to MS Voice Publication Dates In order to continue delivering a high-quality, information chapter newsletter, the MS Voice will be published on a bi-monthly timeline starting May 2012. Please send any questions or feedback to MSVoice@hotmail.com. Thank you for your continued support.

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Bingo Nights Forest City Bingo Country, 1106 Dearness Drive (behind the Best Buy store on Wellington Road). Shutterboard games start at 6:30 pm and the regular bingo starts at 7 pm. BINGO Calendar 2012 Monday, July 16, 7 pm Monday, August 13, 7 pm Monday, September 17, 7 pm

Chapter Calendar

*There will be no Evening Support Group; will resume in September

*There will be no support groups for July/August

*Day Away will resume in September

For questions about the London / Middlesex Chapter’s client services please contact Julie Morris for information at 519-646 6030 Ext 1 or julie.morris@mssociety.ca.

MS Voice MS Voice is the bi-monthly membership newsletter prepared by the London /

Middlesex Chapter of the Multiple Scle-rosis Society of Canada. News items,

story ideas, upcoming events and com-ments can be submitted by email to

MSVoice@hotmail.com or by phone to 519-646-6030.

Contributors

Christine Williams Laura Tyrrell

Art Currie

Social Group, 10 am – 12 pm, Marian Villa

Self Help Support Group, 10 am – 12 pm,

Magnolia Room-W-020

July 4 July 6; 20