Questions from the Rick Hansen Foundation annual report: 1 April 2010 to 31 March 2011 Questions asked by me.

UPDATES FROM ANSWERS PROVIDED BY RHF QUESTIONS THAT ARE UNANSWERED
2010 – 2011 Gifts to Qualified Donees Donations to other organizations from RHF The descriptions are from the RHF annual report (1 April 2010 to 31 March 2011). My questions are below each one in red. BC Paraplegic Association—to support administration and delivery of regional programs and services to better support people with spinal cord injury (SCI) and other physical disabilities in the Province of B.C. to achieve independence, self reliance and full community participation. This funding is allocated to the Community Rehabilitation and Peer Program. 1. How much was donated? $10,000 2. Am i correct to assume that this funding is not in relation to a cure for chronic spinal cord injury?

UNANSWERED

BC Wheelchair Basketball Society (BCWBS)—to support BCWBS’ vision for Let’s Play, which includes identifying children with disabilities ages 0-6 years in ten areas throughout British Columbia (Richmond, Surrey, Abbotsford, Maple Ridge, Chilliwack, Kelowna, Kamloops, Prince George, Nanaimo, Victoria) by creating accessible play spaces for them and providing age appropriate sport chairs and equipment through the auspices of existing wheelchair basketball community clubs. 1. How much was donated? $220,000 2. Am i correct to assume that this funding is not in relation to a cure for chronic spinal cord injury?

UNANSWERED

BC Brain Injury Association—to support the “Provincial Brain Injury Prevention and Awareness Campaign” project, which aims to increase adaptive decision making targeted at reducing the risk of injury in males aged 16 to 30 by creating a comprehensive cutting edge social marketing campaign to change risk/reward assessment. 1. How much was donated? $7,500 2. This does not appear to target a cure for those currently suffering paralysis due to a brain injury. Is this correct?

UNANSWERED

Michael Smith Foundation for Health Research—to fund trainees in spinal cord research. 1. How much was donated? $3,500 2. Did any of the trainees do any research in regards to a cure for chronic spinal cord injury and if they did, what research was conducted?

UNANSWERED

Neil Squire Society—to support a Rick Hansen Institute (RHI) Quality of Life Solutions project, the Neil Squire Society’s “Computer Comforts” program; this includes computer training, adaptive computer devices (adaptive keyboards, voice recognition, etc) and a computer loan program to individuals with SCI and other disabilities. 1. How much was donated? $10,000 2. Am i correct to assume that this funding is not in relation to a cure for chronic spinal cord injury?

UNANSWERED

Northern Brain Injury Association—to support the Northern Brain Injury Association (NBIA)in building sustainable community initiatives for survivors of brain injury in Northern BC communities; this involves increasing and marketing NBIA’s presence region-wide, enhancing online access, increasing regional training activities, prevention and education projects and sharpening coordination capacity. 1. How much was donated? $7,500 2. Am I correct to assume that this funding is not in relation to cure for paralysis for those currently living with brain injury?

UNANSWERED

Pacific Coast Brain Injury Conference Society .. to support the creation of the “Online Brain Injury Education and Social Network” (BI Ed Net) in order to disseminate knowledge ranging from practical rehabilitation strategies and information sharing to emerging research and awareness in the field of neuroscience; a unified education and social network will guarantee improved access and utilization of resources and be comprised of families and individuals with brain injury as well as professional care givers. ..to support the “Pacific Coast Brain Injury Conference” held on November17-19, 2010 with the aim of providing opportunities for the brain injury community to strengthen partnerships, raise awareness of services and programs, introduce new approaches in brain injury research and increase understanding of the problems faced by people with brain injury. ..to support www.brainstreams.ca—an online education and social networking site for brain injury communities created to link support communities, provide awareness, education, information sharing, and current research through social media and interactive online platforms. 1. How much was donated? $66,296 2. Am I correct to assume that this funding is not in relation to cure for paralysis for those currently living with brain injury?

UNANSWERED

Power To Be Adventure Therapy Society—to support the implementation and evaluation ofthe ABI Family Project, an innovative program that is assisting families living with brain injury to improve their quality of life using a combination of adventure therapy, counseling, community support and education. 1. How much was donated? $2,319 2. Am I correct to assume that this funding is not in relation to cure for paralysis for those currently living with brain injury?

UNANSWERED

Spinal Cord Injury Solutions Network(Rick Hansen Institute)—Various $12,131,861 1. This is quite vague. Please tell us what projects dealing with a cure for chronic spinal cord injury were funded and how much that funding totaled in comparison to research not dealing with a cure for chronic spinal cord injury? UNANSWERED The Cridge Centre for the Family—to support the “Cooperative Community Cooking” project where participants with acquired brain injuries will learn to work together to create and operate cooperative community kitchens. 1. How much was donated? $15,000 2. Am I correct to assume that this funding is not in relation to cure for paralysis for those currently living with brain injury?

UNANSWERED

University of British Columbia .. to provide funding for the innovative technologies for improved functional outcomes and quality of life after spinal cord injury (SCI).

1. How much was donated? $551,488 2. Do these technologies deal with chronic spinal cord injury as the nuiance tends to suggest that it deals with improved functional outcomes immediately after injury? .. to provide funding needed to position the International Collaboration on Repair Discoveries (ICORD) for success as part and parcel of the broader vision for the partners at the Blusson Spinal Cord Centre (BSCC); retain and recruit researchers in SCI; establish a thriving research environment for highly experienced investigators, and a fertile ground upon which to prepare junior colleagues to be future leaders of SCI research in Canada and to support the operations of the Research Chair of the“Autonomic Consequences of Spinal Cord Injury” grant. 1. This is quite vague. Please tell us what projects dealing with a cure for chronic spinal cord injury were funded and how much that funding totaled in comparison to research not dealing with a cure for chronic spinal cord injury? Vancouver Coastal Health Authority—final payment on Blusson Building (contribution).

$107,350
Foundation accomplishments The Rick Hansen Institute (RHI)— Integrating national and global translational research, clinical care and community support initiatives. A culmination of Rick’s dream for true collaboration among the SCI community, RHI is an independent network of 200 academic, health, service, and policy-making organizations from across Canada that focus on addressing the priority needs of people who live with SCI and other disabilities. Key RHI successes include: Supporting leading-edge clinical trials and best practice adoption. To date,29 translational research projects have been funded through the SCI Translational Research Network, with several projects yielding early and impressive results, including “ReJoyce” an upper limb rehabilitation system. The Network was created to improve the functional outcomes and quality of life for people with SCI by identifying research breakthroughs in the field, translating them into best practices and implementing these practices through centres of excellence across Canada. 1. How much was spent on the 29 translational research projects? UNANSWERED 2. Of the 29 translational research projects, how many focused on a cure for chronic spinal cord injury and how much were spent on these specifically? UNANSWERED Establishing a world-class SCI registry. The first and only Canadian database to collect and share standardized SCI data, the Registry supports ongoing research and clinical trials that accelerate the discovery of a cure. It represents all of Canada’s 35 major SCI trauma units and rehabilitation hospitals and more than 2,000 participants. Currently, global sites are being added to the Registry. 1. How much has been spent establishing this registry. UNANSWERED 2. How will this registry add to the search for a cure for chronic spinal cord injury?

UNANSWERED
Identifying and funding SCI solutions. The SCI Solutions Alliance, a national collaboration of individuals and organizations committed to customized solutions for people with SCI, has identified and funded hundreds of solutions projects across Canada. 1. How much has been spent on these solution projects? UNANSWERED 2. Which solutions projects have targeted a cure for chronic spinal cord injury and how much has been spent on these solution projects?

UNANSWERED

Creating a leading multi-disciplinary program for basic and translational SCI research. Starting as a modest initiative at the University of British Columbia and the Vancouver General Hospital, ICORD (International Collaboration on Repair Discoveries) has become one of the largest interdisciplinary research programs in the world. with 51 principal investigators and380 trainees. ICORD is developing strategies that promote functional recovery, mobility, community integration and quality of life for people with SCI and related disabilities, and the establishment of international guidelines for SCI clinical trials. 1. How much has been spent on ICORD since its inception? UNANSWERED 2. Of the 51 principal investigators and 380 trainees, how many are dealing primarily with a cure for chronic spinal cord injury? UNANSWERED 3. In regards to the strategies that promote functional recovery, which strategies deal specifically with functional recovery in the chronic stage of spinal cord injury?

UNANSWERED
Funding research grants, studentships and fellowships. From 1988 to 1997, the Foundation provided 322 research grants totalling $7.2 million. Approximately 60 per cent went to basic research, 30 per cent to rehabilitation research, and 10 per cent to prevention research. Many of the grantees have gone on to prestigious careers in SCI research and clinical practice. In 1997,funding for these grants was collaborated and administered by ICORD. 1. Of these 322 research grants, how many dealt with a cure for chronic spinal cord injury?

UNANSWERED
2. What research was done on a cure for chronic spinal cord injury? UNANSWERED 3. Of the total, how much funding went specifically to research grants for a cure for chronic spinal cord injury?

UNANSWERED

International Clinical Trial Guidelines were established to create a common global pathway for clinical trials. This enabled shared data and international, collaborative research on SCI treatment and care. The result of these common guidelines has vastly accelerated best practices and assisted in improving the lives of people with SCI worldwide. RHF and the Christopher Reeve Foundation co-funded the initiative. 1. How much has been spent establishing these trial guidelines? UNANSWERED 2. How many and what clinical trials for a cure for chronic spinal cord injury has been covered under this guideline? UNANSWERED Rick Hansen Neurotrauma Initiative (RHNI) emerged from the 10th Anniversary of the Man In Motion World Tour in partnership with several provinces. The RHNI generated a collaborative network of knowledge leaders in Canada in the field of neurotrauma research, rehabilitation and injury prevention. In BC, the Neurotrauma Initiative was set up to provide on-going funding for SCI research and rehabilitation initiatives from the proceeds of traffic infractions. To date, this fund continues to generate approximately $2 million a year, totalling an additional$20 million in grants over the last 10 years across the province. 1. What research has been carried out in regards to a cure for chronic spinal cord injury?

UNANSWERED
2. How much has been funded in total and of that total which percentage was aimed specifically at a cure for chronic spinal cord injury? UNANSWERED Ontario Neurotrauma Foundation: The Ontario Neurotrauma Foundation (ONF) is a health research under, devoted to strategic and applied research in the field of neurotrauma in Ontario. The RHF was instrumental in lobbying the Ontario government to establish the ONF through an initial grant of $25 million, and was again involved in convincing the Ministry to renew its

funding for an additional 5 years through 2008. To date, ONF has granted over$21 million to approximately 240 research projects across Ontario. 1. Of these 240 research projects, how many have been aimed specifically at a cure for chronic spinal cord injury? UNANSWERED 2. Of the $21 million in grants, how much has gone to projects aimed specifically at a cure for chronic spinal cord injury?

UNANSWERED

Other questions from this report Page 5 The Rick Hansen Foundation has been diligent in its continued financial support of organizations and the individuals they ultimately serve. With our partners we have established spinal cord injury (SCI) best practices, shared patient data networks, accessibility awareness, quality of life grants, school programs and grants for researchers collaborating to find a cure. 1. What grants have been made to researchers collaborating to find a cure?

UNANSWERED
2. Have these grants to researchers collaborating to find a cure included chronic spinal cord injury? UNANSWERED Page 5 Funds raised by the Foundation are committed towards various innovations focused on accelerating the search for the cure, and improving the daily lives of people living with SCI. 1. How much has been committed to accelerating the search for cure for chronic spinal cord injury?

UNANSWERED

Page 39 Our passion for healthy people and active living resides at the core of our existence. From day one, we’ve been involved in finding a cure for spinal cord injuries and in encouraging others to enjoy healthy lifestyles. 1. Since day one, what specifically have you done for finding a cure for chronic spinal cord injury?

UNANSWERED

Page 40 We will seek ways to accelerate the search for a cure through the global expansion of innovations and networks such as the Rick Hansen Institute, ICORD and the Blusson Spinal Cord Centre. 1. What ways have you sought in order to accelerate the search for a cure for chronic spinal cord injury? UNANSWERED Page 40 As well, we will host Interdependence 2012 (i2012), a global conference that will attract 3,000 delegates to advance accessibility and inclusivity around the world, and to build collaborations to find a cure for SCI. 1. What collaborations were built to find a cure for SCI, specifically for chronic spinal cord injury?

UNANSWERED

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