JULY 2013 Recently, the Government of Canada and the Rick Hansen Foundation announced long-term funding to the

Rick Hansen Institute to help accelerate our work. Having renewal funding confirmed is a major milestone for the Institute and could not have been achieved without the tremendous work of our network partners, volunteers and Canadians with SCI. The first five years of our collective efforts were focused on capacity, infrastructure and network building. Going forward, we will place far greater focus on identifying cures (see our definition of cure) for SCI and effectively translating research results into the medical and technological interventions required to improve the quality of life for individuals with acute and chronic SCI and to reduce health care costs. This will continue to include generating knowledge about SCI, translating the knowledge and affecting change in clinical practice to result in better outcomes for people with SCI. We expect to see better results, in terms of improved and standardized care across the country, and a reduction in the level of impairment after injury. What follows are details on our plans for the coming years. 2013-2018 Strategic Direction These two long term sources of funding mentioned above will allow RHI and our clinical research network to execute a strategic plan built around programs, strategies and projects that support our vision and mission (see chart at right). Our strategic direction is based on four key program areas and six supporting strategies. To see a timeline of our objectives over the next 20 years, see image below. The four program areas are: (click on the headers to read more about each program or scroll down) Cure

Focuses on the generation of knowledge and the establishment of treatments that will ultimately result in a cure for paralysis after SCI. Care Focuses on the creation and adoption of best practices to optimize and standardize care delivery for persons with SCI to maximize function and prevent secondary complications. Consumer Engagement Focuses on involving more individuals with SCI in research. Commercialization Focuses on facilitating increased investment into the development of innovative pre-commercial therapeutics, therapeutics, medical devices and diagnostics with application to SCI.

The six strategies supporting these programs are translational research, best practices implementation, informatics, network development, consumer engagement and supporting the next generation of the "Best & Brightest" researchers. Aligning with our vision and mission, each program has its own chair, budget, charter and advisory group (see chart to the right). For the Cure, Care andCommercialization Programs, these advisory groups consist of members of our clinical research network and leading international subject matter experts. As there is overlap in the work that each funding source will support, every attempt has been made to integrate activities and resources to maximize efficiencies. For example, many RHI staff work in more than one program area, and advisory members sit on more than one committee to bring balance and a variety of perspectives from the SCI cure and care continuum. Renewed funding will allow the Institute and its network to:

Identify and validate promising therapies that represent potential cures for paralysis after SCI. Continue to enable international and national collaboration in promising pre-clinical and clinical research efforts and clinical trials. Ensure that new knowledge, standards and best practices for the clinical treatment and care of people with SCI are implemented into practice nationally. Improve execution of a greater number of innovations. Inform, empower and engage people with SCI to seek opportunities to participate in clinical research and their own health decision-making.

Cure Program RHIs Cure Program is focused on supporting cure discoveries through pre-clinical research through to evidence-based practice. In consultation with experts and international representatives from various stakeholder groups, the program will first develop a roadmap for RHIs role in cure-focused research efforts internationally. At the earliest stages of the research continuum, RHI will support preclinical research (research undertaken before human testing, such as animal model research) and will support translation of promising preclinical findings into clinical (i.e., human) research, as well as back-translation from clinical to preclinical when questions arise during human testing. To support newly emerging areas of research that utilize human samples (such as blood and cerebrospinal fluid), RHI in partnership with UBCs ICORD will support the establishment of an International SCI Biobank to store these samples and make them available for research purposes Once the safety and feasibility questions have been proven in preclinical research, RHI will support a number of large, multi-centre clinical trials. We are continuing two existing cure related studies CAMPER and Minocycline and will commence at least two more, in several cure-related areas including

neuroregeneration, neuroplasticity and neuro-protection. RHI may play different roles in each study, from that of funder, to that of sponsor (overall responsibility for carrying out the study), to providing technical expertise, IT infrastructure or clinical site support. The Membership of the Cure Advisory Committee is being finalized and will convene in September for its inaugural meeting. The Committee will be chaired by Dr. Brian Kwon, MD, FRCSC, PhD, Associate Professor, Department of Orthopaedics, Faculty of Medicine, University of British Columbia and Attending Spine Surgeon, Vancouver Spine Program, Vancouver General Hospital. Care Program Led by Dr. Kathy Kovacs Burns, MSc, MHSA, PhD, Director, Interdisciplinary Health Research Academy Edmonton Clinic Health Academy the program aims to identify and fill gaps in knowledge regarding the clinical management of SCI as well as to promote best practices in SCI care delivery based on existing evidence for Canadians who are newly injured or those living with an existing SCI. While improved care will benefit the patient directly, the Care Program is also tightly linked to the Cure Program in that the standardized practice of care are a necessary precursor to the multi-site clinical research and trials to be undertaken in search of cures. The key indicator of success for the Care Program is to have 50% of SCI centres in Canada accredited by 2018, according to the SCI Standards developed in partnership with RHI and Accreditation Canada in 2012. RHI will continue to work with the network collaborators to continue to improve care by translating knowledge gained through existing projects, such as the Access to Care and Timing and Rehabilitation E-Scan projects. National data from RHSCIR will continue to be analyzed by researchers across Canada, resulting in a number of peer-reviewed publications expected shortly. Consumer Engagement Program The Consumer Engagement Program aims to engage people with SCI in the research process, by improving awareness of SCI research knowledge and value and enhance opportunities for people with SCI to make evidence-based

health decisions. This program is led byJocelyn Tomkinson, a Research Development Facilitator at ICORD Spinal Cord Injury Research Centre at UBC and the Rick Hansen Institute. The Consumer Engagement Program will engage people with SCI in the following ways:

A pilot, patient self-management program: to be developed and implemented in partnership with all stakeholders including clinicians, people with SCI, and consumer organizations, this initiative aims to improve outcomes among people with SCI through self-management. This pilot is aimed at equipping people with SCI with enhanced skills for self-management that would in turn lower re-hospitalization rates, but may also affect quality of life as self-management skills can be applied to physical activity, diet and sexual health. A central recruitment model: One of the major challenges faced by SCI researchers worldwide is the inability to recruit sufficient participants for clinical research studies, due to SCIs relatively small population. The recruitment model will provide people with SCI and their care-givers with an inventory of all SCI-related clinical research studies and inform them of their eligibility. RHI will ensure that all features of this recruitment model will meet appropriate privacy and security standards.

A go-to resource for people with SCI and their supporters: This resource will gather evidence-based information about SCI from injury to community, aimed at connecting people with SCI with resources for health and self-management, support, quality of life and participation in research. This resource will be developed and distributed in collaboration with consumer groups and partners. A Consumer Advisory Board: This is a representative group of consumers and advocates that will reflect consumer priorities and provide insight into Consumer Program activities and act as a resource for RHI and ICORD where needed.

Commercialization Program Over the 2013-2018 period, RHI intends to facilitate innovations brought to market for the benefit of people with SCI through its Commercialization

Program. This program led by John Barclay, MBA, Manager, Commercialization & Industry Relations at the Rick Hansen Institute aims to facilitate the development of innovative pre-commercial therapeutics, medical devices and diagnostics that will improve the lives of those living with SCI. The activities of the program will be primarily concerned with positioning selected projects to acquire additional funding from investor or industry sources, specifically project co-funding and follow-on funding. Projects supported through RHIs Commercialization Program will be those that are selected through a RHI funding opportunity and that have a product development or commercialization component to the project. The Commercialization Program is not a standalone initiative within RHI as it supports the product development and commercialization aspects of projects within RHIs Cure, Care and Consumer Programs. As a component of RHIs Commercialization Program, RHI has launched the RHI SCI Global Investment Forum. The purpose of the Forum is to connect early-stage and emerging companies to potential investors and strategic partners. The Forums will be held at established events that already attract a critical mass of life sciences and biotechnology investors and corporate business development executives. A pilot of the RHI SCI Global Investment Forum was held at the Interdependence 2012: Global SCI Conference in May of 2012. The first official Forum was held at Biotech Showcase 2013 in January in San Francisco and the next Forum is scheduled for BioPharm America 2013 in September in Boston. The presenting companies at the Forums thus far were not recipients of RHI funding; however, moving forward the Forums will likely feature RHI funding recipients.

The Year Ahead: Priorities of F2014 We are already five months into our fiscal year, which will be largely marked by planning, scoping and development of our new four program areas and continuing the work started years ago. Going forward, we will be reporting progress against the following Operational Priorities, which are reviewed annually:

1. Development of Cure and Care Program strategies, and engagement with and communications to the RHI Clinical Research network 2. Activate key international collaborations 3. Complete on-going research activities related to the Rick Hansen Spinal Cord Injury Registry (RHSCIR) Of course, given the work ahead and that our funding is only secured for five years, our ultimate success is dependent on our partnerships with provincial and other partners in co-funding projects which require long term support. Thanks to the federal government and the tireless advocacy of Rick Hansen and the Rick Hansen Foundation team, funding renewal will have a far-reaching impact not only for Canadians and our health care system, but for people around the world, and will further solidify Canadas reputation as an inventive, global leader in SCI research and care. At this time of unprecedented scientific progress and transformative global communications technology, a world without paralysis after SCI is possible. We look forward to sharing further details of our progress over the coming months and welcome your questions and comments. Also, please check out our frequently asked questions regarding new funding.