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mS Walk: gateway to a community | 3

Annual meeting of members on June 16 – see proxy on page 11.

Fall 2007

CANADA

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Multiple sclerosis is

a complex disease that affects every person differently. We serve people with primary-progressive MS

and secondary-progressive MS and their loved ones every day. We also bring focus to the many questions that remain unanswered about progressive MS through our research activities.

This issue of MS Canada focuses specifically on progressive MS. On page 3 you will read about a donor who annually funds MS research and our announcement of a $3.8 million collaborative grant led by Dr. Peter Stys at the University of Calgary, who is looking for answers on the possible causes of and eventual treatments for progressive MS.

Also on page 3, we applaud a group of teenage boys who, every year since 2007, participate in the MS Walk for their friend’s mother who lives with primary-progressive MS. The enthusiasm of this youth group is commendable and inspiring. We hope this

story encourages you to take action for your loved one and participate in your local MS Walk this season.

On page 5 you will read about Ken Reynolds, who advocates for fitness in disease management for progressive MS. You will also find a special insert in this edition that focuses on advocacy. This action-oriented insert provides tips on everything from advocating for yourself at doctor’s appointments to how to get involved in changing the political landscape to better serve the MS community.

I would like to thank Novartis for their support of this edition of MS Canada through an unrestricted educational grant. Whether you are someone who is touched by progressive MS or know someone who is, it is important to remember that daily action can have a large impact on quality of life. Sign up for the MS Walk, attend a swimming class, call your local member of parliament to tell him or her what matters to you. Exercise your mind, your voice and your body – take action today. ■

Yves Savoie

Message from Yves

Yves Savoie

MS Canada, Spring/Summer 2012

Published by the Multiple Sclerosis Society of Canada175 Bloor St. E., Suite 700, Toronto ON M4W 3R8

Tel: (416) 922-6065 • Fax: (416) 922-7538Toll free: 1-866-922-6065 • Website: mssociety.ca/mscanada

Charitable Registration no. 10774 6174 RR0001

Our Mission: To be a leader in finding a cure for multiple sclerosis and enabling people affected by MS to enhance their quality of life.

President and chief executive officer: Yves SavoieEditor-in-chief: Jody Fiorino

Managing editor: Tiffany Regaudie Cover photo: Mike McCue 

ISSN 0315-1131Canadian Publications Mail Product

Sales Agreement No. 40063383

Lace Up! Speak Up!

Why is the MS Walk important to you?

Tell us why Every Step Matters.

Speak up, upload and share a YouTube video 

telling us why you lace up for someone you love 

Visit laceupspeakup.ca to upload your video. 

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Jo-Anne Findlay was working as a chartered accountant when she was diagnosed with

primary-progressive MS seven years ago. “I’ve always been optimistic about my life with MS,” she says, “but at first I remained private about my diagnosis and didn’t want it to take over my home.”

As Jo-Anne warmed to discussing MS with her friends and family, her youngest son Colin formed an MS Walk team with his friends in 2007. This inspiring group of six 15-year-old boys raised $72,000 in four years for their local MS Walk. They requested help from

family and friends across the country and hosted a fundraising party the night before the MS Walk, which once raised $3,500 in last-minute donations.

Since then, all the boys have started university – but every year they still fundraise for their original MS Walk team, Friends of Jo-Anne. For Jo-Anne, the MS Walk helps her feel uplifted and inspired by the constant support of her son and his friends. She says, “I believe the MS Walk has taught my son and his friends about some of the challenges others confront every day. The event helps put a face to MS in my community.”

Jo-Anne now contributes enthusiastically to her MS community, acting as chair of the finance committee and MS ambassador for the Manitoba Division. Her team will be participating in their sixth MS Walk in 2012.

For more information and to register for MS Walk, visit mswalks.ca ■

Jacques Furois has donated $1,000 to the MS Society every year since 2003. He gives

because he believes in a future free of MS.

Jacques was diagnosed with MS in 1989 at the age of 41. At the time, he lived off his land near Saint-Vallier, Quebec. He was able to continue farming for ten years before requiring a wheelchair for mobility. Today Jacques lives with progressive MS, and although he has sold his farm animals he still enjoys living in the same house with his wife of 40 years.

After receiving support and information from the MS Society for many years, Jacques started donating annually to research. “I want to know what causes MS, and I want researchers to find a cure for this disease,” says Jacques.

In November the MS Society of Canada and the Multiple Sclerosis Scientific Research Foundation

announced a $3.8 million collaborative grant led by Dr. Peter Stys from the University of Calgary’s Hotchkiss Brain Institute.

The study, which may have special relevance for those with progressive MS, hypothesizes that the inflammatory response in MS is the result of an underlying degenerative process rather than the primary cause of injury. Progressive disease is generally characterized by damage without much inflammation. “If we can understand more about the earliest triggers in the disease processes in MS, we might learn how to prevent damage,” Dr. Stys says.

Thanks to annual donors like Jacques, hope is on the horizon.

For more information on the many ways to donate to MS research, visit mssociety.ca/donate ■

Giving to research: Collaborative progressive mS research grant

Jo-Anne Findlay with her son, Colin Findlay (right), and Ms Walk team member Danny Militano (left)

mS Walk: Gateway to a community

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Maryann Moore was diagnosed

with relapsing-remitting MS 20 years ago. For 10 years she injected herself with a disease-modifying therapy until her doctor stopped treatment when she

developed progressive MS. “There was never a moment when I was officially diagnosed with progressive MS,” Maryann says. “It became obvious my disease had moved on from relapsing-remitting when I no longer needed disease-modifying therapy.”

Secondary-progressive MS is diagnosed when the separation between relapses and remissions becomes less distinct. Occasional

flare-ups, minor improvements and even periods of stability may occur, but overall, there is an accumulation of disability. There are currently no disease-modifying therapies available for progressive MS, although there are many disease management options available.

As her MS progresses, Maryann believes it is important to maintain a sense of community with friends and family. “I remind myself that I’m not a burden to people,” she says. “I don’t do some of the things I used to, like driving. I rely on people to take me out, and they’re happy to do so. I just have to ask.”

Maryann stresses the importance of monitoring your own disease progression to facilitate self-advocacy during doctor’s appointments. She also suggests bringing a friend or family member to appointments as a second set of ears for accuracy in conversations with doctors.

Regarding the unpredictability of MS, Maryann says she has chosen to adapt and look forward. “I’m still me and I still contribute to my community,” she says. “When MS twists and turns, I try to twist and turn with it.”

For more information on progressive MS and disease management, visit mssociety.ca/progressiveMS ■

mS transitions: From relapsing-remitting to progressive MS

See the special insert in this issue for more tips and information on medical advocacy for MS.

Maryann Moore

Lace up for someone

you love

National sponsors:

Change lives for the better, join over 60,000 walkers and volunteers across Canada in the movement to end MS.

Register at mswalks.ca or 1-800-268-7582

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endmS Transitional Career Development Award winner announced

Ken Reynolds was a civil engineer with three young children when he was

diagnosed with relapsing-remitting MS in 1990. During the first few years of his diagnosis, Ken’s symptoms were manageable and he was able to continue to work. In 1997 he was diagnosed with progressive MS and made the difficult decision to stop working.

Throughout this period of transition, Ken and his wife Delores looked to the MS Society for information on disease management. Through this research, Ken discovered yoga classes offered at his Edmonton Chapter office. “I’m a huge advocate for physical fitness improving mobility,” Ken says. “I exercise every day to help with balance, and I don’t know where I’d be without it.” Since starting yoga, Ken

has spoken to the media on behalf of the MS Society on the benefits of an active lifestyle for people living with MS.

When living with a disability, it’s important to remember that physical fitness is still possible according to your level of mobility. “Exercise has a significant effect on cardiovascular fitness, muscular strength and endurance and mobility,” says Garry Wheeler, vice president, Edmonton Chapter, MS Society. “Exercise can also have an impact on psychological function such as depression. More research is needed on how exercise impacts fatigue, but exciting evidence is emerging regarding protective effects on cognitive function and the nervous system.”

For more information on fitness and MS, check out the MS Society publication MS and Fitness at mssociety.ca/MSandfitness ■

The endMS Research and Training Network

proudly announces Dr. Jorge Alvarez of the University of Montreal as the recipient of the David L. Torrey endMS Transitional Career Development Award. Dr. Alvarez’s research will focus on developing an

independent research program to understand the physiology and role of CNS barriers during the course of MS, which is needed to better understand disease progression.

Every year, this award provides successful post-doctoral and clinical fellows with $500,000 to fund the last two years of their MS-focused fellowship and the first three years of their first MS-focused faculty position in a Canadian institution. For more information on the endMS Research and Training Network, visit endmsnetwork.ca ■

Staying mobile: Better living through fitness

CCSVi updateThe 18-month reports from seven 

multi-disciplinary teams investigating 

CCSVI (chronic cerebrospinal venous 

insufficiency) in MS indicate that they are

making good progress toward providing 

essential data and critical analysis as

these two-year projects move toward 

their completion. For the latest news on 

CCSVI, please visit ccsvi.ca

Ken and Delores Reynolds

Dr. Jorge Alvarez, winner of the Transitional Career Development Award

Working with your mS team: Questions about treatment

Your MS team is a group of medical professionals who support you throughout your diagnosis, symptoms and treatment. Your team may consist of one or more neurologists, nurse practitioners, general practitioners, primary care providers and other specialists.

A diagnosis of MS brings with it many questions about possible treatment. It can be difficult to remember what to ask to get all the information you need. The following checklist will help you maximize the often limited time you have with your MS team to discuss treatment options.

❑ Which treatment is best for my type of MS?

❑ What are the possible benefits and risks of treatment?

❑ How will different treatments affect my lifestyle?

❑ What side effects may occur? What is the likelihood that I’ll experience these side effects?

❑ What should I do if these side effects occur?

❑ Is special monitoring needed once I start the medication? How often? Who pays for these tests?

❑ How will I know if the medication is

working? If it is working, should I continue

with my current treatment or switch to

something that may be better for me?

❑ What do I do if I forget to take a dose?

❑ How do I know if I am having a relapse?

❑ What if the medication doesn’t work? How

will that affect my treatment options later on?

❑ How long can I take the medication? Is

there long-term efficacy and safety data

available for this medication?

❑ Whom do I contact if I run into problems

with my medication?

❑ How often do I need to see my neurologist/

MS clinic?

These questions are from the MS Society

publication Exploring Your Options: Considering

Risks and Benefits of MS Medications.

Visit mssociety.ca/ExploringYourOptions

or contact your local chapter to access the

publication, which includes other tools to help

you make decisions on treatment. ■

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Multiple sclerosis is an unpredictable disease that affects everyone differently. A diagnosis of MS does not mean that you are powerless; you can still take action to ensure your individual needs are met.

In this special feature, find out how to maximize time with your MS medical team to help make treatment decisions that are right for you. Receive guidance on how to talk to your employer about your MS. Learn how to make your voice heard with government officials. This special feature provides information and tips on how to engage with your community and be a strong advocate for someone who really matters – you!

Special feature: Advocating for yourself

Before the discussion

• Ask your doctor for a letter clearly outlining your capabilities and limitations in relation to the demands of your job or workplace.

• Draw up a list of some suitable accommodations. What accommodations would be effective for you? What accommodations would maintain or increase your productivity?

• Prepare a script. Put your request for accommodation in writing.

During the discussion

• Be positive and discuss exploring options. Focus your presentation on ways your enhanced productivity will benefit your employer. Mention only the symptoms that interfere with your work.

• Ask for a workplace assessment by an occupational therapist to identify useful accommodations.

• Be prepared to negotiate reasonable accommodation.

After the discussion

• If you reach an agreement, discuss follow-up procedures and the timetable for action.

• If your employer proposes an unreasonable compromise, ask for time to think it over. If you still cannot agree, arrange a follow-up meeting.

• If you cannot negotiate a satisfactory solution, you have the right to appeal. In a unionized workplace, you have a right to labour representation.

• Be aware that if your employer offers reasonable accommodation that enables you to perform the essential duties of your job and you reject it, you may be absolving your employer from the legal duty to accommodate.

The information above is from the MS Society publication A Guide to Employment and Income Support. Visit mssociety.ca/EmploymentandIncomeSupport or contact your local chapter to access the publication. The MS Society can also provide information on legal or advocacy help, or refer you to other organizations that can assist you. ■

Requesting workplace accommodation: employee/employer discussion tips

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A diagnosis of MS does not always mean you have to stop working. Some people

have a mild form of MS and never experience any symptoms that prevent them

from working. Others cope with varying degrees of disability that temporarily or

permanently affect their ability to function at work. You should decide based on your own

needs if you would like to continue working. If you are able to continue working, you may

have some questions about what you can do to ensure a productive professional life. You

are not legally required to disclose your diagnosis to an employer, current or prospective.

However, if you need workplace accommodation, you will have to disclose to your employer

that you have a disability.

Employment and MS: Questions and Answers

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government advocacy: your voice within your community

Many people affected by MS are passionate advocates for themselves and others living with disabilities. There are several kinds of advocacy models, including individual and systemic.

Individual advocacy is when a person seeks to uphold their own rights and interests by addressing instances of discrimination, abuse and neglect, or barriers to access to treatment. Systemic advocacy seeks to make long-term changes that remove barriers and ensure the collective rights of people with multiple sclerosis and other chronic diseases and disabilities.

You can participate in both models. Through the following scenarios, you’ll learn tips and tricks on how to take action and advocate for yourself and others in your community.

Scenario #1: Advocacy researchYou find it difficult to walk outside after a snowfall. In your community, property owners are not required by law to clear sidewalks within 24 hours (they can wait 48 hours). You want a new by-law that requires snow be cleared by property owners within 24 hours so that you and others with limited mobility have access to clear walking paths.

In this case, you should research the snow removal by-laws of nearby cities and their enforcement practices. The following provides tips on effective advocacy research so that you are equipped to present your case for a new by-law to city officials.

tip #1: Always keep your audience and purpose in mind. This will help you stay on track and find the most relevant information.

tip #2: Build a knowledge network. Finding the information you need is much easier if you ask the right people for help. Talk to those in your knowledge network to learn what may already be known about your issue, including MS Society staff, researchers, doctors, other advocates, librarians and journalists.

tip #3: Understand the basics. Focus on the most important details first.

tip #4: Accuracy is crucial. You should only use information that you understand. If you are having difficulty understanding concepts or legal language, ask the people in your knowledge network for help.

tip #5: Use reliable sources. If you find information in a newspaper or magazine article, try to find the original sources cited by the author. If you are trying to gauge public opinion, it is perfectly acceptable to interview or survey people in the community. However, you should be careful about drawing unscientific conclusions.

tip #6: Always exercise caution when using the internet as a reference. Sites like Wikipedia allow users to upload information, and they do not always provide sources to back up their claims. Public libraries often have access to reliable scholarly databases.

tip #7: Always keep track of where you found your information. Keep a detailed record and refer back to it when someone questions a statement you make.

Scenario #2: Fast communicationYou have completed your by-law research and have been waiting several weeks for the opportunity to speak with the mayor about

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your issue. As you are leaving your doctor’s office, you find yourself face to face with him or her in the elevator.

To get the mayor’s attention, you need to be clear, concise and memorable. You only have about 60-90 seconds. What will you do and say?

try using these five steps.

Step #1: Identify yourself and those you represent. Are you speaking on behalf of the MS Society, a community based coalition or are you simply a concerned citizen?

Step #2: Identify your concerns (be brief) – What is the key issue? How many people are affected? How are they affected?

Step #3: Identify your proposed solution. Tailor this to your specific audience.

Step #4: Indicate how you plan to follow up or follow through.

Step #5: Thank the person for their time.

Scenario #3: meetings with decision makersWhether you are an MS Ambassador acting on behalf of the MS Society or an individual advocate speaking for yourself and/or on behalf of others, you will ideally meet with key decision makers to push your issue forward. The following tips will help you to prepare for future meetings with business leaders, elected representatives and other key decision makers.

prior to the meeting

• Send an introductory letter via fax or email.

• Follow up with a phone call within 2-3 days and request a meeting. Be patient but persistent.

• Review relevant biographical information for all attendees.

• Prepare an agenda with established objectives and send it in advance of the meeting.

During the meeting

• Stick to your agenda and remember your objectives.

• Be passionate and respectful, not argumentative and confrontational.

• Provide specific local examples with specific local solutions.

• Ask for their help with a solution (call to action).

• Leave behind any appropriate material such as position papers, fact sheets, contact information.

• Thank them for their time and indicate when you plan to follow up.

Following the meeting

• Send a thank you letter to the people you met with and include any follow up information that you promised.

• Follow up again in a few weeks’ time to see if there has been any progress on the issue and to find out if there is any other information you can provide.

This section was informed by the MS Society publication Making a Difference Today: Handbook for Government Relations and Advocacy. Visit mssociety.ca/MakingaDifferenceToday or contact your local chapter to access the publication. ■

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Q: I have been diagnosed with progressive

MS, and I am struggling to accept this news.

Is there anything that can help?

A: The first step toward accepting a diagnosis

of a progressive phase of MS is to allow

yourself time to grieve. The grieving process

lets you feel sad about the changes you’re

experiencing and gives you time to gather

the emotional energy to figure out how to

move forward with your life. Other important

steps include:

• Learn everything you can about progressive

MS. Read the MS Society of Canada

booklet, Living with Progressive MS, and

ask about other recommended reading.

• Partner with your healthcare team to manage symptoms.

• Explore assistive technology—there is a vast array of tools available to help you do the things that are important to you. Being willing to do things differently is often the key to success. Multiple Sclerosis: 300 Tips for Making Life Easier, 2nd ed. (Demos Medical Publishing) may provide helpful information.

• Look after your overall health and wellness.

• Set priorities. If your symptoms are preventing you from doing things you want to do, save your energy for the things that are most important to you.

For more MS Answers, visit msanswers.ca ■

Jo-anne Parris knows how to throw a party. She has been hosting dinner parties to

raise money for multiple sclerosis for almost 10 years.

Diagnosed with MS in 1999, Jo-anne was inspired to host a fundraising party after reading about it in an MS Society newsletter. “I’ve done a lot of things,” Jo-anne says. “I’ve hired a band, booked a restaurant and given away door prizes. At first 20 people came, then it grew to 45. Most of the people who attend have been coming regularly for years.”

Body Harmonics, a pilates studio that holds classes for people living with MS in Toronto,

has donated videos and exercise equipment

to Jo-anne’s events for door prizes. This year

Jo-anne will be designating funds from her

party to services in her community, which

provide help such as support groups, special

assistance and equipment funding, and

information and referral.

Hosting dinner parties is just one way to

participate in do-it-yourself fundraising.

For more ideas, visit DIYMSfundraising.ca ■

Do-it-yourself fundraising: Raising money your way

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Multiple Sclerosis Society of Canada • Notice of Annual Meeting of Members

NOTICE IS HEREBY GIVEN that the Annual Meeting of the members of Multiple Sclerosis Society of Canada will be held at the Marriott Bloor Yorkville, 90 Bloor Street East, Toronto, ON. M4W 1A7, on Saturday, June 16, 2012 at 1:00 p.m. (Eastern Standard Time) for the following purposes:

i) Receiving the report of the members of the National Board of Directors and the audited financial statements for the year January 1, 2011 to December 31, 2011; together with the report of the auditors thereon;

ii) Electing members of the National Board of Directors;iii) Appointing auditors;v) Such further and other business as may properly be brought before the meeting.

One position for director-at-large will become vacant just before the AGM. Any member wishing to nominate a candidate as a director-at-large must do so on or before Friday, June 08, 2012, in accordance with the bylaws of the MS Society of Canada.

Membership in the MS Society of Canada is held through individual chapters or divisions of the MS Society. Each chapter or division has the authority to make and amend membership rules and regulations including stipulating a waiting period for new members to be eligible to vote at members meetings. In light of this, members attending the AGM will be confirmed in good standing and provided with voting cards as appropriate in keeping with the governing rules and regulations of the chapter or division of which they hold membership. Members in attendance at the AGM will be required to provide valid photo identification.

Members who are unable to attend the meeting in person are requested to date and sign the form of proxy below, detach and return it to the head office of the Society, 175 Bloor Street East, Suite 700, North Tower, Toronto, ON M4W 3R8 by Monday, June 11, 2012. Attention: Rosanne Portelance.

DATED at Toronto, Ontario this 5th day of April 2012 Mr. David A Garton, Secretary

--------------------------------------------------------------------------------------------------------------

Multiple Sclerosis Society of Canada Proxy • for Annual Meeting of Members, June 16, 2012

The undersigned hereby appoints Jim Casey, or failing Robert Decker, François Coupal or David A. Garton or _________________________ as proxy with power of substitution, to attend and vote for the undersigned at the Annual Meeting of members to be held Saturday, June 16, 2012 and at any adjournment or adjournments thereof and to vote and otherwise act thereat for and on behalf and in the name of the undersigned in respect of all matters which may come before the meeting in the same manner the undersigned would do if personally present thereat.

(please print)

DATED this _____ day of ___________ 2012, SIGNATURE: ____________________________

Surname: _______________________ Middle Initial: _____ Given Name: _________________

Street Address: ________________________________________________________________

City/Town: _____________________ Province/Territory: _____ Postal Code: ____________

Chapter/Unit: ______________________________ Telephone No ____________________

Please date, sign and return this proxy to the Secretary, Multiple Sclerosis Society of Canada, National Office, 175 Bloor Street East, Suite 700, North Tower, Toronto, ON M4W 3R8 by Monday, June 11, 2012. Attention: Rosanne Portelance.

Fall 2007

CANADAShare your comments:

mscanada@mssociety.ca

Update your mailing address or subscription preferences by contacting your division office. Division contact information can be found at

mssociety.ca or call 1-800-268-7582 or email info@mssociety.ca. To view this publication

online, visit mssociety.ca/mscanada

RETURN UNDELIVERABLE CANADIAN ADDRESSES TO:

Multiple Sclerosis Society of Canada700 – 175 Bloor St. E.Toronto, ON M4W 3R8

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Join in this spring and summer

April 15-29 MS Walks mswalks.ca

1-27 Lace up! Speak up! campaign laceupspeakup.ca

May MS Awareness Month!

5-27 MS Walks

9 Carnation Campaign launch at Parliament Hill

10-13 MS Carnation Campaign mssociety.ca/carnation 29 MS Awareness Month

Day at Queen’s Park (Ontario) 30 World MS Day 31 Research teleconference

with Dr. Anthony Traboulsee, 6:00-7:30pm ET: Hear the latest MS research and ask questions mssociety.ca/research

June 3 and 10 MS Walks 2-29 MS Bike Tours

July 7-29 MS Bike Tours

August 11-26 MS Bike Tours 23 A&W Cruisin’ for a Cause

September 8-9 MS Bike Tours 9 MS Walks

Publications on progressive Ms

Working for Me: Research in Understanding & Treating Progressive Multiple Sclerosis, National MS Society (USA) and MS Society of Canada, 2011. Access this publication at mssociety.ca/WorkingforMe

Living with Progressive MS, MS Society of Canada, 2008. Access this publication at mssociety.ca/LivingwithProgressiveMs

Join a support group. Self-help/support groups are an informal way to link people with common concerns. All have the common goal of providing emotional support and practical ideas about coping with MS. To find out about a support group in your area, call 1-800-268-7582.

Inform yourself on federal financial matters for persons with disabilities at http://bit.ly/oBTisQ

resources for you

Attention! MS Canada is now being delivered via email. If you would like to receive MS Canada electronically instead of a printed version, please send your full name, current address and email address to mscanada@mssociety.ca