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making choices: mS, ccSVi, and you 3

Annual meeting of members on June 18, see proxy on page 7.

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P eople living with MS have been and always

will be our top priority and the driving force behind all our fundraising initiatives. The MS Walk is the MS Society of Canada’s largest fundraiser.

Proceeds from this event go directly towards providing support for local programs that benefit people living with MS in addition to supporting Canadian-led research efforts. This spring, we urge you to get engaged and participate in your community’s MS Walk. Your efforts will be felt locally and have a direct impact on people living with MS in your neighbourhood.

If you or someone you know is considering CCSVI procedures, I invite you to visit CCSVI.ca. It is our new web-based resource that is specifically tailored to meet the informational needs of those wanting to learn more about chronic cerebro-spinal venous insufficiency (CCSVI) or considering CCSVI procedures. A unique engagement component of this site is the “Your Story” feature, which allows you to share personal experiences, perspectives and opinions on CCSVI in a safe environment.

Last December, the MS Society’s endMS Research and Training Network, a nationwide initiative formed to accelerate discovery in the

field of multiple sclerosis in Canada, hosted over 200 researchers and trainees at the 2010 endMS Conference. Over the span of four days in Whistler, British Columbia, the conference successfully facilitated learning, collaboration and knowledge exchange within a multi-disciplinary group of MS-focused researchers and trainees.

Dr. Manu Rangachari, once an MS Read-a-Thon participant, has been awarded the 2010 EMD Serono, Canada endMS Research and Training Network Transitional Career Development Award. This award aims to draw the best talent to MS research, driving it forward and making Canada a leading contributor to discovery in the field of MS. The award, valued at $500,000 over five years, will fund the last two years of Dr. Rangachari’s MS-focused postdoctoral fellowship and the first three years of his first MS-focused faculty position in a Canadian institution. A special thanks to EMD Serono, for funding this prestigious award.

As with all funding from pharmaceutical companies – which accounts for only two percent of the MS Society’s overall revenue – this generous contribution is subject to the MS Society’s strict policies that prevent any control or influence by the donor on our decision-making. This is consistent with the ethical principles established by the association of Canada’s research-based pharmaceutical companies which require that they assure the independence and integrity of stakeholders, in terms of their operations, policies and activities.

I hope that you enjoy this issue of MS Canada and that you will join us at your local MS Walk this spring. ■

Yves Savoie President and chief executive officer President, Ontario Division

Message from yves

Yves savoie

MS Canada, Spring 2011

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 Graydon

Managing editor: Angeline Mau ISSN 0315-1131

Canadian Publications Mail ProductSales Agreement No. 40063383

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Today, people living with MS have more

choices than ever before regarding the treatment and management of their symptoms.

Nardina has been living with MS for 17 years and for her, an increase in the range of treatment options for MS is a reason for celebration.

Nardina, who chooses not to treat her MS using standard drug therapies, was excited when she heard about the CCSVI procedure and welcomed it as a possible option for helping her manage MS. Chronic cerebrospinal venous insufficiency or CCSVI is a term used by Dr. Paolo Zamboni that suggests clogged veins can be a cause of MS. He believes that unblocking the veins can have a positive effect on one’s quality of life.

In November 2010, with hopes of decreasing the severity of her MS symptoms, Nardina traveled to Mexico to receive a CCSVI procedure. “I fell often

and worried one day I would fall down the stairs,”

she says about making the decision to go. “When I

heard about CCSVI I wanted the procedure done

right away. I needed to change my life.”

Post-procedure, Nardina is pleased with the decision

she made and reports several improvements to her

MS symptoms. She recognizes that not everyone

has positive CCSVI-treatment results and supports

the need for accelerated research like the MS Society

of Canada’s joint funding of seven CCSVI and MS

research studies totaling $2.4 million with the U.S.

National MS Society. In addition, Nardina backs any

activities that could potentially fast-track CCSVI

being available within the Canadian healthcare system

as a treatment for MS and expressed appreciation

for the MS Society’s commitment of $1 million for a

clinical trial if research shows one is warranted.

To help you in making decisions about MS and

CCSVI, the MS Society has created a web-based

resource that offers up to date and accurate

information on CCSVI and addresses the questions

and concerns faced by those considering

CCSVI-related procedures. Please visit CCSVI.ca. ■

e xciting research studies, taking place right

here in Canada and abroad, are uncovering

important findings in the MS disease process.

It is known that damage to myelin, the layers that

protect the brain’s nerve fibres, leads to the onset of

symptoms that are associated with multiple sclerosis.

Thus, MS researchers have been exploring how to

reduce and repair damage to myelin as an effective

treatment for the disease.

At the University of Calgary, researchers led by

Dr. V. Wee Yong, have identified the important role

that EMMPRIN, a molecular switch, plays in the

intensity of symptoms of MS. In fact, they have found

that MS symptoms can be reduced by inhibiting EMMPRIN, which they have successfully observed in animal models of MS. They have also found that people with MS showed significantly higher levels of EMMPRIN in brain lesions, reinforcing its role in MS.

Across the Atlantic, scientists have identified the ability for the brain’s own stem cells to regenerate myelin. Researchers at the universities of Cambridge and Edinburgh now know that a newly identified mechanism is a key to regenerating myelin. The finding implies that MS damage can be repaired.

Both the Canadian and UK-based studies were funded in part by the MS Society of Canada. ■

making choices: MS, CCSVI and you

Research advancements in mS

Nardina, post CCSVI procedure.

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training at Harvard continues for Canadian researcher

O ne of the programs funded

by the endMS Research

and Training Network is the

endMS Transitional Career

Development Award. This is a

$500,000 award that supports

postdoctoral or clinical fellows

for the last two years of their MS-

focused fellowship and the first

three years of their MS-focused

faculty position in a Canadian

institution. We are pleased

to announce that the 2010 recipient of the EMD Serono,

Canada endMS Research and Training Network Transitional

Career Development Award is Dr. Manu Rangachari.

Dr. Rangachari, born and raised in Hamilton, Ontario, is

a research fellow at the Brigham and Women’s Hospital

and Harvard Medical School in Boston, Massachusetts. His

research is focused on the pathogenic role of T cells in a

mouse model of MS.

“My goal is to become one of Canada’s leaders in MS

research,” shared Dr. Rangachari. “Thanks to the MS

Society’s endMS initiative, I will have the opportunity to

continue my postdoctoral training at Harvard Medical

School, where I am able to interact with some of the

brightest minds in immunology and pathobiology.

Following my postdoctoral training, my endMS TCD

Award will provide generous support for the setup of an

independent research programme in Canada that builds

on my postdoctoral work, as well as on the wealth of MS

research currently being pursued in Canada.”

The generous support of many donors and volunteers

enables the MS Society to continue to foster exceptional

MS research and researchers to rapidly accelerate Canada’s

contribution to the global effort to end MS. ■

M omentum on the endMS

Research and Training Network,

a nationwide initiative formed to

accelerate discovery in the field of

multiple sclerosis in Canada, continues

to grow. Since its launch four years

ago, the endMS Network has grown

to involve over 770 experienced

researchers and trainees from

more than 50 academic and health

institutions across Canada. Through

innovative education and funding

programs, the endMS Network aims to

attract, train and retain MS researchers

and increase opportunities to conduct

MS research in Canada.

2010 endmS conference

T he passion and commitment to MS research among researchers

and trainees has never been stronger. Last December, the endMS Research and Training Network proudly hosted 206 researchers and trainees at the 2010 endMS Conference.

“Overall [this was] a wonderful experience for trainees to network with other trainees / researchers and see the breadth of MS research in Canada. This will definitely keep me wanting to pursue MS research,” shared a conference attendee.

With generous support from donors and volunteers, the endMS Research and Training Network will continue to strive to accelerate MS research in Canada.

Read the full story online mssociety.ca/mscanada

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A shared vision of ending MS

emD Serono and the mS Society:

young mind raises MS awareness

The MS Society of Canada is proud to celebrate EMD Serono’s significant gift of $500,000 to

the endMS campaign, in support of a prestigious endMS Transitional Career Development Award. The successful candidate of this award is Dr. Manu Rangachari, a research fellow with Brigham and Women’s Hospital and Harvard Medical School in Boston (see previous page).

EMD Serono’s expression of leadership is continuing evidence of the common vision and goals that are shared with the MS Society and is another step forward in the tremendous partnership that began well over a decade ago. EMD Serono’s commitment to elevating awareness of MS and efforts to better understand it have helped make the MS Society a reliable resource for information on living well with MS. It has allowed the MS Society to meet the needs of the MS community and has reached beyond $2.5 million in support of essential programs and services.

EMD Serono’s support of the MS Society spans the

entire organization and their employees are actively

involved in events from coast-to-coast. Deborah

Brown, EMD Serono’s president, is a founding

member of Women Against MS (WAMS) and has

been instrumental to the success of the program.

“Offering support to patients living with MS is

about more than offering a line of products that

treat the disease. It’s also about offering hope for

the future and the means to bring that hope to

life. That’s why we also focus on providing patient

support services, are actively engaged in fundraising

for the MS Society, and now are pleased to support

the research goals of the endMS campaign,”

says Deborah. “Creating an environment where

research into MS will flourish in Canada is vital to

increase our understanding of the disease, improve

treatments and ultimately find a cure.” ■

For grade four student, Alexandra Martin,

raising awareness of MS is an important cause. Alexandra’s mom was diagnosed with MS. So, when Alexandra was given the chance to create a fundraiser as part of Project Giveback, the MS Society of Canada was an obvious choice.

Over the past four years, grade four students at Crestwood School have been participating in Project Giveback, a passion-based program designed for elementary students to develop empathy, build character, and ignite community-minded citizens.

For the project, Alexandra developed a speech, a visual presentation, and an activity as a means to raise awareness of MS. Her mom was also a part of her presentation and spoke to the class about her experience with MS. “I was really proud of my mom. It’s hard going in front of a whole audience telling them what happened – what you’ve lived through. It’s a good thing though because we understand it a little more.”

Supporting children, teens and young adults continues to be a priority for the MS Society. In 2010 an MS youth strategy was developed, which will result in, amongst other resources, a new on-line community – that will launch in May 2011 – designed for young Canadians who have been impacted by MS. Look for more information about our resources for youth in future issues of MS Canada. ■

Alexandra Martin, grade four student

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J ohn Daley was enjoying his third

year as manager of claims adjusters at a large insurance company where he worked for nine years. But it was when John was at the height of his career that he had to make a difficult decision to leave

his job and apply for long-term disability benefits.

John, of Whitby, Ontario, recalls that fatigue, a common symptom of MS, made him so tired that to get through the day or even to be able to drive home he would nap in a bathroom stall. He was so focused on giving all his energy to work that he had no time for his family.

“I can’t complain about the level of understanding and support at work. My employer allowed a lot of flexibility,” adding he didn’t have to apply for Employment Insurance sickness benefits as so many others must.

Flexibility is what the MS Society of Canada is urging the federal government to provide in its income support programs for people with disabilities. We are asking that EI sickness benefits be more flexible to allow people with MS and other episodic diseases to work part-time and receive partial benefits. ■

D iagnosed with multiple sclerosis almost 11 years ago, Gini Lauder, of Winnipeg, has

come to rely on medical services available in her community. So when the Manitoba government announced a three-pronged MS strategy in October 2010, Gini was elated.

Minister of Health Theresa Oswald announced the commitment of an additional $500,000 annually to the MS clinic in Winnipeg, added Tysabri® (natalizumab) to the drug formulary and set aside $500,000 for a potential clinical trial of CCSVI.

Gini uses the MS clinic for counselling and occupational therapy to help her cope with physical and emotional changes. With funding for another neurologist, nurse and occupational therapy services at the clinic, people like Gini will continue to receive the care they need to lead a healthy lifestyle. “There

are so many people in Manitoba with MS so another

neurologist will make it much better for us,” explains

Gini. She added, “I’m also excited Tysabri is now

covered for those who need it.” Gini has used one

of the disease-modifying therapies for 10 years and

continues to do well.

The MS Society has urged the federal and provincial

governments to earmark funds for a potential

CCSVI clinical trial, create registries to track people

who have had CCSVI procedures and ensure

Canadians have post-procedure care. At press time,

the Ontario government announced the creation

of an expert advisory group to advise on follow-up

care and treatment of Ontarians with MS who have

undergone CCSVI treatment abroad. ■

For more information visit ccsvi.ca/govresponses

Flexibility’s key to managing mS and employment

manitoba: another province responds to CCSVI & MS

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We are also urging the federal government to: make disability tax credit refundable; allow spouses to claim caregiver tax credit; change the Bankruptcy and Insolvency Act so employees on long-term disability are at the top of the list of creditors in the case of bankruptcy.

John Daley

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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 18, 2011 at 1:00 p.m. (Eastern Daylight 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, 2010 to December 31, 2010; 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 10, 2011, 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 13, 2011. Attention: Rosanne Portelance.

DATED at Toronto, Ontario this 31st day of March 2011, Mr. Robert Decker, Secretary

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

Multiple Sclerosis Society of Canada Proxy for Annual Meeting of Members, June 18, 2011

The undersigned hereby appoints Linda Lumsden, or failing Jim Casey, David Garton, Robert Decker 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 18, 2011 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.

DATED this _______ day of ___________ 2011 SIGNATURE: __________________________________

Please print clearly your name, address and phone number

Surname: ___________________ Middle Initial: ______ Given name: ____________________________

Street Address: _____________________ Town/City: __________________ Province: _______________

Postal Code: _____________ Phone number: _______________ Division/Chapter/Unit: ______________

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 13, 2011. Attention: Rosanne Portelance.

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Fall 2007

CANADAShare your comments or stories:

jody.graydon@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

PublicationsMail Agreement

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What’s on this spring!April10-30 MSWalks mswalks.ca

MayMSAwarenessMonth!

1-29 MSWalks mswalks.ca

5-7 MSCarnationCampaign

25 WorldMSDay,MSGlobalDinnerPartymsglobaldinnerparty.ca

June4-25 RONAMSBikeTours msbiketours.ca

5-12 MSWalks mswalks.ca

July23 RONAMSBikeTours msbiketours.ca

Q : My son was diagnosed just after his 16th birthday with MS. Since then, he’s really struggled at school. I’ve tried to explain to his principal and teachers about how difficult things have become for him because of the fatigue but they don’t seem to “get it” because he doesn’t show any symptoms people usually associate with MS. What can I do to make this better?

answer is online msanswers.ca

Visit mssociety.ca for more details.

Hear the latest on MS research and have questions answered by one of Canada’s leading neurologists. The MS Society of Canada is pleased to announce the ninth annual MS Research Teleconference taking place on Wednesday, May 11.

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