StakeholderS' report 2011 1

a JoUrNeY ForWard

StakeholderS' report 2011

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Contents

03 Executive summary

04 Renewal Init iat ive

05 Support ing people l iv ing with MS

09 Research

12 Resource development

15 Financia l oversight , performance

and operat ions

18 Information technology

19 Human resources

20 Governance

22 Conclusion and out look for 2012

StakeholderS' report 2011 3

The Stakeholders’ Report is a companion piece to the Multiple Sclerosis Society of Canada’s 2011 National Impact Report. The report’s objective is to provide an in-depth analysis of key initiatives undertaken at the MS Society in 2011. The MS Society values its relationship with stakeholders: whether you are a person living with MS, member, donor, staff, volunteer, partner agency or funder, we hope this report will assist you in understanding the complexities of our work in the non-profit sector and within Canadian communities.

Together, the MS community made great strides in 2011 toward realizing the bold vision of Momentum 2015, our strategic plan. There has been progress on research developments, increased treatment options, new tax legislation for caregivers and innovative programs and services delivered at the local level.

While we made progress in some areas, this year was not without its challenges. The global economy continued to experience a sluggish recovery and a debt crisis in many parts of the world. This financial reality affected consumer and donor confidence.The impact was most visible in a decrease of our donation and event revenues, which, in part, fund the valuable programs and services that help improve the lives of those touched by MS. Ironically, during a period of economic upheaval, demand for the MS Society services grows. An estimated 1,000 new cases of MS are diagnosed in Canada annually.

The MS Society has been a source of hope and support to those with MS for over 60 years. In 2011, the MS Society began an organization-wide Renewal Initiative. The goal of the initiative is to streamline and modernize our structures and processes to better support people living with MS, and enhance our ability to fund the world’s most compelling research. This report will provide more detail on this initiative.

The Stakeholders’ Report highlights the MS Society’s 2011 performance in the following areas: supporting people with MS, MS research, resource development, financial oversight and performance, information technology, human resources and governance.

executive summary

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In 2011, the MS Society launched the Renewal Initiative, a national commitment to consider all aspects of the organization. The Renewal Initiative will consider the MS Society in its entirety: our fundamental structure, roles and responsibilities; how we provide services and fund research; and how we can most effectively deliver on our mission to find a cure for MS and enable people living with MS to enhance their quality of life. People with MS are at the centre of all that we do and are the driving force behind this important initiative. For over 60 years, the MS Society has been the only national organization that supports both services for people touched by MS and MS research. The MS Society’s mission statement guides the Renewal Initiative to move us closer to a world free from MS.

The impetus for the Renewal Initiative resulted from a number of factors. As there was an increased need for support and services for people living with MS, the MS Society’s ability to fund this growth was impacted by lower revenues. Interest in MS research is at its peak, with a record number of meritorious research applications received in 2011. The need to accelerate the pace of research to find the cause and cure for MS in the shortest possible time requires greater funding to support the growth of our research program. New government rules that regulate the cost of fundraising of federally regulated charities have changed the way the MS Society raises funds and has heightened the public appetite for accountability and transparency. Changing Canadian volunteer trends and volunteer expectations are also a factor in our ability to extend our reach through our volunteer networks in communities across Canada.

The MS Society welcomes the changing landscape of Canadian health charities. New, creative and bold solutions will be solicited from our stakeholders to inform the outcomes of the Renewal Initiative.

For more information on the Renewal Initiative visit mssociety.ca

renewal Initiative

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People living with MS are at the centre of all that we do at the MS Society, and enhancing the quality of life for those impacted by MS is one of our top priorities. In our work to support this initiative, we ensure that people living with MS have the best possible programs and services, access to treatments to help manage MS symptoms and the ability to stay up-to-date with the most comprehensive information on MS.

Over the past several years, the MS Society has experienced an increase in requests for services. This trend continued in 2011. The rise in the need for services for people living with MS reflects the challenging economic climate that caused cutbacks to some health services at various levels of government. In addition, improvements in diagnostic techniques have led to earlier diagnoses of MS. The Renewal Initiative will consider the increased demand for services and how the MS Society can continue to support those diagnosed with MS.

Income Support ImprovementS

In the 2011 federal budget, the government introduced the Family Caregiver Tax Credit, which for the first time allows spouses to claim a tax credit for acting as a caregiver. In collaboration with other health charities, the MS Society advocated for caregiver tax relief for many years and is pleased that the federal government is recognizing the important role of caregivers in communities across Canada.

The measure will apply in 2012 and subsequent taxation years. The 15 per cent non-refundable credit is applicable on an amount of $2,000 for caregiver expenses. Over 80 per cent of caregivers to individuals with chronic illness or disability are family members. The government recognizes the sacrifices made by many Canadians to care for their loved ones through this tax credit.

Youth engagement StrategY

Multiple sclerosis is the most common neurological disease among young adults in Canada. In 2011, we launched SomeoneLikeMe.ca, an interactive online resource for young people to get involved, find information and take action. As part of a strategy to engage youth and young adults impacted by MS, visitors to the site can build relationships with other youth touched by MS and learn about resources that are available specifically for youth living with a diagnosis of MS or know someone who is. Response to this resource has been positive, and there has been worldwide engagement from countries around the world, including Germany, the United Kingdom and the United States.

Supporting people living with mS

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In 2011, the MS Summer Camp marked its fifth year of service. The MS Summer Camp is a place where youth impacted by MS between the ages of 8-18 can enjoy a supportive, interactive and stress-free environment with other youth touched by MS. A new camp to develop leadership and life skills for young adults (aged 18-21) impacted by MS was introduced in 2011. To date, MS Summer Camp programs have hosted over 115 children and young adults with MS.

mS treatmentS

Today, people with MS have more choices than ever before regarding the treatment and management of their MS symptoms. The MS Society provides information on therapies to treat MS and supports the choices of Canadians in seeking these treatments.

An important component of our government relations strategy is to advocate for access to all approved MS treatments. Oral therapies to treat MS represent a new generation of disease-modifying medications. In 2011, Health Canada approved Gilenya (fingolimod), the first oral therapy to treat MS. Gilenya is used to primarily treat those who have tried one or more other MS therapies, but were unresponsive or intolerant. The MS Society provided information on behalf of people living with MS to the federal-provincial-territorial agency that makes recommendations to governments about whether a treatment should be reimbursed. Following the positive recommendation of Gilenya, securing coverage for the therapy on provincial drug formularies was one priority of our government relations work in 2011. When an investigation regarding the possible safety of Gilenya surfaced, the MS Society acted quickly to inform the public of the concerns with Gilenya.

Many Canadians have travelled abroad to receive treatment for chronic cerebrospinal venous insufficiency (CCSVI). Our government relations staff and volunteers pressed federal and provincial governments to create registries to track Canadians who have received the CCSVI procedure abroad and to ensure that those who have undergone the treatment were provided with follow-up medical care upon their return to Canada. Some success on this front was realized when the governments of British Columbia and Alberta established observational studies and registries to track people in these provinces who underwent CCSVI treatment. Similarly, the government of Ontario developed CCSVI treatment follow-up care guidelines. We believe that our advocacy efforts on CCSVI increased awareness of MS and prompted the federal government

(Youth engagement strategy continued)

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to announce a national monitoring system on MS. The monitoring system will capture information to help identify disease patterns and track treatments and long-term outcomes for people living with MS. We look forward to collaborating with the MS community, governments, health agencies and the network of MS clinics to build the monitoring system.

The MS Society was also pro-active in providing support to those who had the CCSVI procedure. As an example, consider the actions of the Waterloo Chapter of the MS Society. Recognizing the importance of providing accurate information on CCSVI and to provide its members with a supportive environment to share their feelings about CCSVI and their experiences with the treatment, the Waterloo Chapter hosted a series of discussion groups specifically on CCSVI throughout 2011. The discussion groups provided an opportunity to impart general information on CCSVI and for individuals who had undergone the CCSVI surgery to discuss their experiences and outcomes from the treatment. This is one example of activities that went on across the country at the local level to build and show support for people living with MS who were highly interested in CCSVI.

InformatIon on mS

The MS Society is committed to enhancing Canadians’ knowledge of MS and related information. In response to requests from the public on CCSVI, the MS Society launched CCSVI.ca, a website dedicated to sharing the most up-to-date and accurate information on CCSVI. The site provides information on CCSVI research, treatment, media and government activities. Site visitors can also share personal experiences, perspectives and opinions on CCSVI in a safe environment.

In addition to CCSVI.ca, the MS Society developed an internal toolkit of resources to assist our volunteers and staff in responding to public inquiries on CCSVI, and to facilitate discussions on CCSVI.

Our comprehensive selection of publications on many aspects of MS continues to grow. A new resource, Managing School Related Issues: A Guide for Parents of a Child or Teen with MS was released in 2011. The publication provides information to assist parents with children or teens with MS in navigating the school system to provide the best possible education for their children after a diagnosis of MS.

(MS treatments continued)

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clIent ServIceS and programS

MS Society services have traditionally focused on supports such as equipment provision and special assistance programs to help an individual with MS live with the disease. In addition to these services, a new direction in client services has emerged that fosters active living in the community. For example, the Edmonton Chapter’s MS ActiveNOW program focuses on disease management through exercise for people living with MS. The program was created in response to the increasing awareness of the benefits of physical activity for people living with the disease. The program is targeted to people with MS, fitness/lifestyle trainers and medical professionals.

In 2011, national and division client services staff teams collaborated to enhance programs and services. Planned projects include the sharing of client services best practices, a review of MS Society publications and the development of a standardized package of materials for those newly diagnosed with MS.

In alignment with the MS Society’s commitment to put people with MS at the centre our work, our client services and MS Walk teams have collaborated to share strategies to strengthen the connection of the MS Walk to the MS cause, and to highlight the benefits that people with MS derive from our fundraising efforts.

communIcatIng wIth people lIvIng wIth mS

We have shifted our communications strategy to personalize the work of the MS Society and reinforce that our priority is people living with MS. The MS Society continues to provide accurate and up-to-date information about MS. Media interest in CCSVI throughout 2009 and 2010 generated public awareness of MS and stimulated greater need for information on all aspects of MS. In 2011, our website was updated to be more client focused. Our homepage prioritizes information that people living with MS may want to access, including bulletins on MS research advancements and treatment options for managing MS symptoms. An individual can subscribe to MS Updates to receive research information via email. To capitalize on new media technologies, we have also increased the number of videos that deliver information on MS and the actions of the MS Society.

The MS Society continues to engage people with MS through social media sites such as Twitter and Facebook.

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Interest in MS research in Canada has never been greater, and more researchers than ever before are looking into answering the questions that surround this disease. MS is a complex disease, and it is for this reason the MS Society funds a broad range of research that reflect the areas of greatest potential, such as remyelination, immunology, genetics, virology, vitamin D, CCSVI, MRI and paediatric MS.

The MS community urgently wants to find answers about the potential risks and benefits of CCSVI treatment. In June 2011, the federal government announced that it would fund a phase I and II clinical trial of CCSVI. Securing funding for CCSVI clinical trials was a key component of our government relations strategy and was highlighted in our 2011 federal election activities. In partnership with the MS Scientific Research Foundation, the MS Society committed $1 million toward the clinical trials. We have collaborated with the Canadian Institutes of Health Research (CIHR), the agency facilitating the trials, in calling for research proposals. This approach builds on work begun in 2010, when the MS Society of Canada and the National MS Society (USA) jointly funded seven studies totaling $2.4 million to examine whether there is a relationship between CCSVI and MS. In 2011, an interim report by the research teams indicates that they are on track to provide essential data and critical analysis as these research projects reach their conclusion. The ongoing work by the seven teams helped inform the design stage of the phase I/II CCSVI clinical trials.

progreSSIve mS

While there are treatments for relapsing-remitting MS, there is currently no disease modifying therapies for progressive forms of MS. In recognition of the critical need to fund more research for progressive forms of MS, the MS Society and the MS Scientific Research Foundation announced a $3.8 million grant to investigate the complex interplay between degeneration and inflammation in multiple sclerosis. The grant will fund a three-year study led by Dr. Peter Stys from the University of Calgary that will investigate damage that occurs in MS prior to inflammation. This particular study has special relevance for those living with progressive forms of MS.

An international research collaboration on progressive forms of MS and on the relationship between MS and vitamin D is being fostered by the Multiple Sclerosis International Federation (MSIF) and a number of other important players in the field of MS research, including the MS Society of Canada and the National MS Society.

research

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In addition to supporting biomedical research, the MS Society also funds clinical and population health research that impact the quality of life of those touched by MS. For example, a team of MS researchers from Europe and Canada are examining how MS risk factors such as infectious agents, smoking and vitamin D exposure act together. (To date the cause of MS is unknown.) This study involves participants from five countries and, upon its completion, will be the largest MS risk factor study ever conducted. The study findings will lead us closer to understanding what triggers the disease, which will be an important step toward finding more effective ways to treat it, and ultimately to cure it.

Dr. Daria Trojan and her team from McGill University have found that individuals with MS tend to experience poor sleep, which is related to fatigue, one of the most common symptoms of MS. Their investigation is examining sleep and its abnormalities in MS, and they expect that their work will result in managing and reducing fatigue in people living with MS.

Progress on MS research was prominent at the 64th annual meeting of the American Academy of Neurology. Over 500 presentations related to multiple sclerosis were conducted. National MS Society grantees and MS Society of Canada grantees were among those presenting novel findings on many approaches to stopping the disease process and restoring function. Dr. Fiona Costello of the University of Calgary discussed research funded by the MS Society entitled, “The Impact of Gender on Retinal Architecture in Optic Neuritis: Does Sex Matter?” This study examined the role of gender on the retinal nerve fiber layer (RNFL) in people with MS after they experience optic neuritis (ON), which involves a sudden reduction in vision within the affected eye. Their investigation showed that gender and hormonal influences may in fact impact instances of lower visual function associated with RNFL thickness, as they found lower RNFL values in men compared to women.

endmS capItal campaIgn and endmS reSearch and traInIng network

People living with MS want the cause and cure for MS to be found. To accelerate the pace of research we established the endMS Campaign in 2008 with the aim to raise $60 million over five years to recruit, train, support and retain the next generation of MS researchers in Canada. The goal of this effort is to accelerate discovery in the field of MS to end MS in the shortest possible timeframe. The flagship initiative of this

(Progressive MS continued)

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investment is the $20 million endMS Research and Training Network, a nationwide initiative offering innovative education and funding programs to MS researchers and trainees.

With more than 950 MS researchers and trainees from over 65 academic and health institutions across Canada in 2012, the momentum in the endMS Research and Training Network keeps growing with the tremendous effort and commitment from MS researchers and people affected by multiple sclerosis.

The success of the endMS Network has generated interest in the MS Society’s research program and has resulted in a significant increase in the past three years in the number of applications to the MS Society’s research program. We need to ensure that we are able to fund all quality research so that we can continue to pursue a future free from MS and improve the quality of life for those living with MS today. We are very excited by the pace of MS research and are hopeful that through the Renewal Initiative we will develop ways to sustain, support and grow the momentum of MS research in Canada.

One program of the endMS Research and Training Network is the endMS Summer School. Convened at the University of Calgary, the 2011 program focused on the study “Neuroprotection and Repair: From Bench Research to Clinical Application.” Forty-three young MS research trainees learned about the next frontiers in MS research and treatment: conferring neuroprotection and promoting regeneration of the injured nervous system. In addition to enhancing participants’ knowledge and skill in MS research, the program aimed to increase capacity for interdisciplinary research and establish a peer network among MS research trainees.

Another initiative of the endMS Network is the endMS Transitional Career Development Award, which supports promising trainees in establishing a strong foundation for their independent research careers. The award valued at $500,000 aims to draw and retain the best talent to MS research, driving it forward and making Canada a leading contributor to discovery in the field of MS. The recipient of the 2011 David L. Torrey endMS Research and Training Network Transitional Career Development Award is Dr. Jorge Alvarez of the University of Montréal. 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.

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While many Canadian health charities receive up to 70 per cent of their funding from government sources, the MS Society is largely self-funded and receives 95 per cent of our funding from donors. The vast majority of our revenue is received from more than one million Canadians who support our work through contributing to a variety of fundraising opportunities such as participatory events (e.g MS Walks, MS Bike Tours), direct mail, sales of carnations on Mother’s Day weekend, A&W Cruisin’ for a Cause and the endMS Campaign. Without donor support we would be unable to fund MS research, and our capacity to provide important services to those touched by MS would be gravely compromised.

Given our annual reliance on our supporters for funds, an effective resource development strategy is a critical component of our work. Key elements of this strategy include diversifying the way we raise funds, continuing to seek fundraising efficiencies, strengthening relationships with volunteers and donors to deepen their understanding and commitment to our work, and being transparent and accountable to donors and the public. In alignment with our cost of fundraising policy, reducing the cost of fundraising was an important focus in 2011. One such measure was the scaling back of the prospecting or acquisition phase of our direct mail program. We also communicate more frequently with event participants via email which is much more cost effective than mailing out packages.

The MS Society’s participatory events and appeals for support sent via direct mail still deliver the majority of our fundraising revenues. Our signature participatory events – MS Walks, MS Bike Tours, and MS Read-A-Thon, continue to attract many repeat participants who collect smaller gifts on our behalf.

In response to the decline in MS Walk registrations over the last few years, the program was refreshed with new creative materials and key messaging for 2012. The new tagline, “Lace Up for Someone You Love,” better reflects the relationship of the MS Walk participant to the person they are walking for who lives with MS. Additional recruitment activities were implemented in 2011, such as an enhanced tele-recruiting campaign to past participants and a postcard mailed to those participants without email. Changes were also made to the leadership and management of the MS Walk team to realize cost saving efficiencies.

Many of our corporate sponsors continued to support the MS Society despite the tough economic climate. In 2011, A&W’s third annual Cruisin’ for a Cause campaign raised over $1 million, a 50 per cent increase over the 2010 campaign. The one-day

resource development

StakeholderS' report 2011 13

event raises $1 for the MS Society from every Teen Burger® sold at participating A&W restaurants in Canada. In addition to the sale of Teen Burgers®, revenue was also generated throughout the summer months through the sale of license plate cut-outs, in-store coin boxes and a text-to-give campaign. Overall, this event was a tremendous success, and we have high hopes for continued growth in 2012.

The RBC/MS Society golf tournament was another successful corporate partnership. The sold-out tournament in 2011 marked the fourteenth year for the golf tournament. In 2012, a fourth course will be added to the event. Enerflex has been a tremendous supporter of the Calgary MS Walk since 1998, and in 2009 Enerflex became the title sponsor of all 12 MS Walks in Alberta.

Not all of our corporate sponsors were insulated from economic factors. RONA Canada, a long-time sponsor of the MS Bike Tours, withdrew its support for the program starting in 2012 due to financial circumstances. The MS Society is grateful to RONA Canada for its tremendous support of the MS Bike Tour program and for its leadership in the development of MS Bike Tour teams.

Participation in our Women Against Multiple Sclerosis (WAMS) events was very strong in 2011 thanks to highly engaged local volunteers. WAMS gala luncheons and a breakfast were held in Toronto, Montreal and Vancouver.

Our endMS Campaign continued to make great strides toward our $60 million goal, surpassing $58 million by December 2011. Much of the campaign’s success can be attributed to the work of our endMS Campaign cabinet members. These dedicated volunteers from Atlantic Canada to British Columbia have been instrumental in helping the MS Society attract larger gifts and confirm multi-year pledges. This low-cost, innovative, volunteer-driven approach to appealing for such gifts is less common in the health charity sector and has enabled us to expand our fundraising capacity. endMS donors have expressed a preference for innovative and creative research projects to support. When the campaign has reached its goal, these donors will be stewarded to support exciting new developments in the research program that are in part due to the excitement generated by the increased level of interest in MS research because of the endMS Campaign.

Our information technology, fundraising and marketing teams collaborated in the implementation of a new online platform that facilitates fundraising for our participatory events. The new platform is more efficient for participants to engage

(Resource development continued)

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and build relationships with donors in raising funds to help end MS. In 2011, the new platform was piloted with five MS Bike Tours and a small sample of Do-it-Yourself fundraising participants. Do-it-Yourself fundraising is a program where participants create their own custom event to raise funds to end MS. The remainder of the MS Bike Tours and all of the MS Walks will be added to the platform for 2012 along with expanded capacity for our newer revenue-generating programs such as the MS Climb, a team-based endurance activity held in different locations.

The MS Walk and MS Bike Tours are well-promoted activities with thousands of participants who help raise MS awareness and put a face to MS in communities across the country. Our direct mail program complements our events and has proven to be an effective way to grow our revenues by attracting new donors to the organization. Some of these new donors later provide major gifts or estate gifts.

There are many opportunities for our supporters to raise funds to end MS. To bring these opportunities to the attention of our supporters we employ strategies such as promoting MS Bike Tours at MS Walk sites and encouraging MS Read-A-Thon participants to join their local MS Walk.

As part of our goal to build a fundraising culture that focuses on our donors, the MS Society honours donor preferences with respect to donations. Should a donor wish to donate specifically to services directly impacting a person with MS, research in general or CCSVI-specific research, donors are encouraged to indicate this when they make a contribution.

The MS Society receives only one per cent of total revenue from pharmaceutical companies. Funding received from these companies is in alignment with Canada’s Research-Based Pharmaceutical Companies guidelines and strictly adheres to the MS Society’s own policy that prevents any control or influence by the donor on our decision making.

As an example of the benefit of receiving support from a pharmaceutical partner, the Quebec Division hosted the seminar “Women & Wellness: Achieving Wellness While Living With MS,” to enhance education on MS and women’s issues. The seminar was funded through the National Education Series, sponsored by Pfizer Canada.

(Resource development continued)

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overSIght

The MS Society’s long-term sustainability depends, in part, on our ability to be fiscally responsible: to oversee and manage the funds we receive; to seek efficiencies and reduce expenditures; and to prudently manage our risk and investments.

Volunteer oversight, combined with our financial administrative processes, promotes transparency and enhances the MS Society's ability to safeguard our assets. The audit committee of the national board and various finance committees at the division and chapter level meet regularly to review the financial progress of the MS Society, and to prepare and review budgets and financial statements. The mandate of the audit committee also includes audit responsibilities and risk management.

coSt of fundraISIng

The MS Society raises funds through a diverse portfolio of sources and campaigns, each with its own cost structure. It is understood and expected that some costs will be incurred to raise funds, yet the MS Society strives to keep these fundraising costs as low as possible. In 2011, the national board approved the cost of fundraising policy. The policy requires that our consolidated cost of fundraising be at 42 per cent or lower, and individual fundraising programs at any level of the organization not exceed 70 per cent. Other strategies to reduce the cost of fundraising, such as reducing the volume of new donor acquisition mailings and changing the prize structure for fundraising events, have been implemented. The policy confirms our commitment to improve our fundraising efficiencies as articulated in the MS Society’s strategic plan, and meets the requirements of external regulators (Canada Revenue Agency) to reduce the cost of fundraising. We are very pleased to report that, despite a decline in revenue which put added pressure on the cost of fundraising ratio, our cost of fundraising decreased from 44.1 per cent in 2010 to 42.2 per cent in 2011.

ImagIne canada ethIcal code

To enhance our strategic direction of promoting a transparent and accountable organization, the MS Society was accepted into the Imagine Canada Ethical Code Program. The Ethical Code Program is a set of standards for charitable organizations to manage and report their financial affairs in a responsible manner and promote public awareness of the charitable sector’s commitment to ethics and accountability. The MS Society joined 400 other Canadian charities that bear the Ethical Code Program trustmark.

financial oversight, performance and operations

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performance

In 2011, the country’s economic recovery was not as strong as we hoped. Some areas of the country rebounded from the economic challenges more readily than others. The measures implemented in 2010 to reduce organization expenditures and ensure that our resources were focused on top organizational priorities were maintained and strengthened in 2011. All departments and locations continued to find ways to reduce their expenditures in 2011.

In our planning for the 2011 budget, we had the benefit of a comparator year that reflected the first full cycle of our new fiscal year in 2010 running from January to December. One of the key benefits of our new fiscal year is that the majority of our participant fundraising events occur in the first two quarters of the year, and strategies to mitigate potential revenue shortfalls can be implemented in the second half of the fiscal year.

There has been a decline in revenue in the past five years. In 2010, revenue was 10 per cent lower than in 2009. In 2011, revenue was 9.4 per cent lower. Some of our revenue-generating programs performed well while others did not. Our leadership giving, bequests, large MS Bike Tours and third-party events were strong in 2011, but our MS Walk and MS Read-A-Thon programs, along with investment income, experienced revenue shortfalls.

The MS Walk is our largest fundraiser, and this program has brought in lower revenue in both 2010 and 2011, in part due to the challenging economic climate impacting the discretionary income of Canadians. Support of the MS Walk was also impacted by the important choice that many made to focus their fundraising efforts on raising money privately for a loved one to seek CCSVI treatment abroad or to support organizations that focus solely on CCSVI.

The MS Read-A-Thon program has experienced lower revenues over a number of years due to an increase in fundraising to support school related programs and activities, as well as increased fundraising competition from other charities. This trend continued in 2011. Our direct mail program also experienced lower revenue, in part due to the rotating postal strike that occurred midway through the year, and because of the conscious effort to reduce the acquisition mailings to acquire new donors in order to reduce the cost of fundraising.

Our investment income is a key component of our financial revenues. In 2011, the one constant in the equity markets was volatility, and lower returns impacted our investment income. Our investment portfolio declined by 0.9 per cent compared

StakeholderS' report 2011 17

to a gain of 9.8 per cent in the previous year. The national investment committee continues to meet quarterly to ensure the funds we raise are effectively stewarded and safely invested while delivering the best possible returns.

Lower revenues, particularly in the MS Walk program, impacted our ability to fund our activities. However, through the diversification of our fundraising programs and expenditure reductions, we were able to ensure that important client services programs were maintained and research funding for grants and personnel awards funded by the MS Society increased. However, it has now been two years since the MS Society has been able to make a contribution to the Multiple Sclerosis Scientific Research Foundation which is responsible for funding multi-year, collaborative research grants that involve multiple institutions working together on a particular research project. The lower-than-expected revenues in both 2010 and 2011 was a significant impetus for the Renewal Initiative. It is imperative that we return to a place of being able to fund the multi-year, collaborative research grants as some of the most interesting discoveries have come from those grants or new grants that were established because of findings in those areas.

operatIonS

Fostering a streamlined and accountable organization is a strategic direction of the MS Society. Lower administrative costs allow the MS Society to spend more of the dollars we raise finding the cause and cure for MS and supporting those living with MS. In 2011, we continued to implement processes to reduce administrative costs and improve efficiencies by centralizing and automating many administrative processes. More of the MS Society’s financial activities in locations across Canada were centrally processed. Today the majority of our payments are made and delivered through electronic fund transfers. There is growing use of the MS Society’s intranet, which allows for the effective sharing of documents between different parts of the organization and moves the MS Society closer to a paperless environment. All documents from local offices will be delivered to the centralized finance team electronically by the end of 2012. Our paystubs are now provided to our employees electronically. The continued growth of these paperless innovations reduces our paper consumption, postage and delivery costs, facilitates the secure sharing and transfer of documents and reduces our environmental footprint.

The MS Society reduced the amount of leased office space at our head office in 2011. Our administrative expenditures remained flat as a result of one-time costs for lease termination and staff adjustments, but changes in both of these areas will drive administrative costs significantly lower in 2012.

(Performance continued)

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Our strategic plan calls for the MS Society to embrace innovation and technology to help us achieve our mission. In 2011, our information technology infrastructure was upgraded significantly with the introduction of a new online fundraising platform. Our information technology team led the request for proposals process to select Convio, Inc., a specialized online fundraising vendor, and worked with the vendor to implement the new system. User uptake of the new system was initially slow, but with training and support, use of the platform has grown steadily.

Another important information technology investment was the implementation of a telephone system that uses the internet (voiceover internet protocol or VOIP). This technology will help reduce MS Society telephone costs while at the same time offering the latest telephone features to all locations including toll-free office-to-office dialing.

Our information technology team continues to implement and support the growing automation of many of our administrative processes and development of customized forms within our intranet to facilitate the flow of information to the centralized finance team.

Information technology systems are only as good as the people who support them. In mid-2011, a new support services group was launched as a cost-neutral initiative to improve the user support experience. Within three months of the implementation of the new support group, customer satisfaction turned around dramatically and returned back to levels before user support service was outsourced in 2008.

Information technology

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To achieve the expenditure reductions that were necessary to continue funding MS research and to support those living with MS, we reduced our staff complement in 2011. These reductions were implemented at all levels of the organization through attrition and consolidating responsibilities into existing positions.

We continued with the implementation of a number of human resources initiatives that were introduced in 2010. Building on the work from 2010, we enhanced the pay-for-performance system of evaluating and compensating employees. We introduced StartRight, an orientation program that prepares our new employees to be as effective and productive as soon as possible.

human resources

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The MS Society’s vision for 2015 articulates our desire to be a transparent and accountable organization. Governance practices and policies support our ability to achieve this. Building on the enhancements to our governance practices that were implemented in 2009 and 2010, we continued to strengthen our governance capacity in 2011.

The MS Society website was expanded to include a section specifically on governance. The section houses information on our national board including biographies of its directors, the MS Society bylaws and key governance policies, and materials on our national annual general meeting (AGM). Our draft financial statements will be posted on our website as early as possible following the finance committee review and approval of the statements in advance of the AGM. These governance improvements were suggested by our membership at the 2011 AGM, and an update advising our membership of our progress with implementing these suggestions was posted on the website in December 2011.

Another governance priority for the MS Society in 2011 was the development of a membership policy. The MS Society is a member-based organization and our members have rights, privileges and responsibilities. Our members bring strength to the organization, and their active participation impacts the past, current and future success of the organization. The MS Society is committed to ensuring that members can engage with the MS Society in meaningful ways, and to creating greater alignment of membership approaches and practices to provide greater transparency and accountability. The objective of the membership policy is to improve alignment of membership approaches and practices across all levels of the organization and to simplify and create efficiencies in membership systems and management. As part of the membership review, standardized membership best practices will also be developed.

governance

StakeholderS' report 2011 21

The governance committee of the national board has a mandate to ensure the effectiveness of the board and its governance practices. One of the key responsibilities of the committee is the succession planning and nominations process for the national board. This process is supported by surveys that help identify gaps in the core competencies of the board and its leadership capabilities. The committee provides oversight in the planning and implementation of the national AGM. In 2011, the governance committee considered and responded to resolutions that were brought forward by the membership at the 2010 AGM.

The committee will provide leadership for the transition of the MS Society to the Canada Not-For-Profit Corporations Act. Transition to the new act must occur by 2014.

leaderShIp and volunteer dIScloSure

and protectIon polIcY

Our strategic plan and values include the demonstration of ethical behaviour, integrity and adherence to the highest standards of quality, transparency and accountability. Volunteers and employees, especially those in leadership positions, are expected to practice honesty and integrity in fulfilling those responsibilities and to comply with all applicable laws and MS Society policies. In 2011, we implemented the leadership and volunteer disclosure and protection policy by providing our volunteers and employees with access to a secure, confidential toll-free service to report unethical or illegal behaviour. This measure was recommended by our auditors and we acted quickly in developing and implementing the policy.

(Governance continued)

22 StakeholderS' report 2011

Overall, 2011 was a year with opportunities and challenges. Progress was made in moving forward on many fronts to end MS and to improve the lives of those touched by MS. The federal government responded to the needs of people with MS by improving caregiver tax credits and keeping CCSVI a priority agenda item for further discussion and review. The endMS Research and Training Network continues to attract the best and the brightest researchers and has generated an unprecedented interest in our research program. In recognition of the critical need to find treatments for progressive forms of MS, the MS Society funded an important study on the relationship between inflammation and degeneration in MS. The MS Society embraced a new direction to support those living with MS through focusing on overall health and wellness as a way to manage and treat MS.

The trend of lower revenue continued in 2011. The MS Society was quick to implement strategies such as expenditure reductions to address this challenge. As our revenues declined, there was an increase in demand for our services. These challenges and opportunities have encouraged the MS Society to be self-reflective and identify ways in which we can work within our economic and social realities. The Renewal Initiative was launched to consider all aspects of the MS Society and how we can best deliver on our mission. Every effort is being made to engage our stakeholders to provide input into the Renewal Initiative and ultimately have a say in the future of the MS Society.

The MS Society is confident that with your continued commitment and support we will continue our journey forward towards a future free from MS.

conclusion and outlook for 2012

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