MESSAGE FROM THE DIRECTOR
“I’m immensely grateful to our researchers, staff, partners, and importantly, stakeholders that continue their hard work and contribute to CP-NET.”
Dr. Darcy Fehlings
Chair in Developmental Paediatrics, Bloorview Children’s Hospital Foundation
Head of the Division of Developmental Paediatrics, University of Toronto
Senior Scientist, Bloorview Research Institute
Darcy Fehlings: Exergame
Richard Wintle: Investigating the Role of DNA in CP
Peter Rosenbaum: Knowledge Translation
Steven Miller: Risk of Newborn Infection and CP
Fanny Hotze: Access Technology
Jan Willem Gorter: MyStory Project
Impact and Partnerships
Peer-Reviewed Publications (acknowledging OBI funding)
Basilious, A., Yager, J.,& Fehlings, M.G. (2015). Neurological outcomes of animal models of uterine artery ligation and relevance to human intrauterine growth restriction: a systematic review. Developmental Medicine & Child Neurology, 57(5):420-30. doi: 10.1111/dmcn.12599
Dadwal, P., Mahmud, N., Sinai, L., Azimi, A., Fatt, M., Wondisford, F.E., Miller, F.D., & Morshead, C.M. (2015). Activating endogenous neural precursor cells using metformin leads to neural repair and functional recovery in a model of childhood brain injury. Stem cell reports, 5(2):166-73. doi: 10.1016/j.stemcr.2015.06.011
Fehlings D. (2014). To Boldly Go. Editorial. Developmental Medicine & Child Neurology, 56(9):800. doi: 10.1111/dmcn.12554.
Guo, T., Winterburn, J.L., Pipitone, J., Duerden, E.G., Park, M.T., Chau, V., Poskitt, K.J., Grunau, R.E., Synnes, A., Miller, S.P., & Chakravarty, M.M. (2015). Automatic segmentation of the hippocampus for preterm neonates from early-in-life to term-equivalent age. NeuroImage: Clinical,31;9:176-93.doi: 10.1016/j.nicl.2015.07.019
Li, L., Velumian, A.A., Samoilova, M., & Fehlings, M.G.(2016). A Novel Approach for Studying the Physiology and Pathophysiology of Myelinated and Non-Myelinated Axons in the CNS White Matter. PLoS One, 9;11(11):e0165637. doi: 10.1371/journal.pone.0165637
Manning, K., Menon, R., Mesterman, R., Gorter, J., Switzer, L., Campbell, C., & Fehlings, D. (2015). Neuroplastic sensorimotor resting state network reorganization in children with hemiplegic cerebral palsy treated with constraint-induced movement therapy. Journal of Child Neurology, 31(2): 220-226. doi: 10.1177/0883073815588995
Manning, K.Y., Fehlings, D., Mesterman, R., Gorter, J.W., Switzer, L., Campbell, C., & Menon, R.S. (2015).Resting state and diffusion neuroimaging predictors of clinical improvements following constraint-induced movement therapy in children with hemiplegic cerebral palsy. Journal of child neurology, 30(11):1507-14. doi: 10.1177/0883073815572686
Ni, L., Fehlings, D., & Biddiss, E. (2014). Design & evaluation of virtual reality-based therapy games with dual focus on therapeutic relevance & user experience for children with cerebral palsy. Games for Health, 3(3):162-171.doi: 10.1089/g4h.2014.0003
Oskoui, M., Gazzellone, M.J., Thiruvahindrapuram, B., Zarrei, M., Andersen, J., Wei, J., Wang, Z., Wintle, R.F., Marshall, C.R., Cohn, R.D., Weksberg, R., Stavropoulos, D., Fehlings, D., Shevell, M., & Scherer, S. (2015). Clinically relevant copy number variations detected in cerebral palsy. Nature communications, 3;6:7949. doi: 10.1038/ncomms8949
Reeve, R.L., Yammine, S.Z., DeVeale, B., & van der Kooy, D. (2016). Targeted activation of primitive neural stem cells in the mouse brain. European Journal of Neuroscience, 43(11):1474-85. doi: 10.1111/ejn.13228
Ruff, C.A., Yeh, H., Legasto, J.M., Stribbell, N.A., Wang, J., Zhang, L., & Fehlings, M.G. (2013). Effects of adult neural precursor-derived myelination on axonal function in perinatal congenitally dysmyelinated brain: optimizing time of intervention, developing accurate prediction models, and enhancing performance. Journal of Neuroscience,33(29):11899-915.doi: 10.1523/JNEUROSCI.1131-13.2013
Rumajogee, P., Bregman, T., Miller, S.P., Yager, J.Y., & Fehlings, M.G. (2016). Rodent Hypoxia–Ischemia Models for Cerebral Palsy Research: A Systematic Review. Frontiers in Neurology, 7.doi:10.3389/fneur.2016.00057
Sachewsky, N., Hunt, J., Cooke, M.J., Azimi, A., Zarin, T., Miu, C., Shoichet, M.S., & Morshead, C.M. Cyclosporin A enhances neural precursor cell survival in mice through a calcineurin-independent pathway. Dis Model Mech. 2014 Aug; 7(8):953-61
Umebayashi, D., Coles, B., & van der Kooy, D. (2016). Enrichment of Oligodendrocyte Progenitors from Differentiated Neural Precursors by Clonal Sphere Preparations. Stem cells and development, 14;25(9):712-28. doi: 10.1089/scd.2015.0244
Peer-Reviewed Publications (focused on CP by CP-NET investigators)
Ballios, B.G., Cooke, M.J., Donaldson, L., Coles, B.L., Morshead, C.M., van der Kooy, D., & Shoichet, M.S. (2015). A hyaluronan-based injectable hydrogel improves the survival and integration of stem cell progeny following transplantation. Stem cell reports, 4(6):1031-45. doi: 10.1016/j.stemcr.2015.04.008
Christensen, R., Switzer, L., MacIntosh, A., & Fehlings, D. (2016). Change in pain status in children with cerebral palsy. Developmental Medicine and Child Neurology, 59(4). doi: 10.1111/dmcn.13328
Deveale, B., Bausch-Fluck, D., Seaberg, R., Runclman, S., Akbarian, V., Karpowicz, P., Yoon, C., Song, H., Leeder, R., Zandstra, P.W., Wollscheld, B., & van der Kooy, D. (2014). Suraceome profiling reveals regulators of neural stem cell function. Stem Cells, 32(1):258-68. doi: 10.1002/stem.1550
Faulkner, S.D., Ruff, C.A., & Fehlings, M.G. (2013). The potential for stem cells in cerebral palsy – piecing together the puzzle.Seminars in Pediatric Neurology, 20(2):146-53.doi: 10.1016/j.spen.2013.06.002
Faulkner, S.D., Ruff, C.A., Foltz, W., Armstrong, E., Fan, S., Jiang, S., Bregman, T., Yager, J.Y., & Fehlings, M.G. (2015). A translational model of intrauterine growth restriction: Evaluating abnormalities in neurobehavioral function and white matter myelination. International Journal of Developmental Neuroscience, 47(45)
Findlay, B., Switzer, L., Narayanan, U., Chen, S.,& Fehlings, D. (2016). Investigating the impact of pain, age, GMFCS and gender on health-related quality of life in children with cerebral palsy. Developmental Medicine and Child Neurology, 58(3):292-7. doi: 10.1111/dmcn.12936
Führmann, T., Tam, R.Y., Ballarin, B., Coles, B., Donaghue, I.E., van der Kooy, D., Nagy, A., Tator, C.H., Morshead, C.M., & Shoichet, M.S. (2016). Injectable hydrogel promotes early survival of induced pluripotent stem cell-derived oligodendrocytes and attenuates longterm teratoma formation in a spinal cord injury model. Biomaterials, 83:23-36.doi: 10.1016/j.biomaterials
Hilderley, A., Fehlings, D., Lee, G., & Wright, V. (2016). Comparison of a robotic-assisted gait training program with a program of functional gait training for children with cerebral palsy: Design and methods of a two group randomized controlled cross-over trial. SpringerPlus, 5(1):1-14. doi: 10.1186/s40064-016-3535-0
Hlyva, O., Palisano, R., Freeman, M., Hanes, J., Rosenbaum, P., Nguyen, T., Stewart, D., & Gorter, J.W. (2016). Who am I? Lessons on (dis)ability and health identities from a qualitative study with adults with cerebral palsy. Developmental Medicine & Child Neurology, 58(S5): 1-119. doi: https://doi.org/10.1111/dmcn.80_13224
Jeffers, M., Hoyles, A., Morshead, C.M., & Corbett, D. (2014). Epidermal growth factor and erythropoietin infusion accelerates functional recovery in combination with rehabilitation. Stroke, 45(6):1856-8.doi: 10.1161/STROKEAHA.114.005464
Kingsnorth, S., Orava, T., Provvidenza, C., Adler, E., Ami, N., Gresley-Jones, T., Mankad, D., Slonim, N., Fay, L., Joachimides, N., Hoffman, A., Hung, R., & Fehlings, D. (2015). The development of a toolbox for assessing chronic pain in children with disabilities. Pediatrics, 136(4):e947-e960. doi: 10.1542/peds.2015-0273.
Knights, S., Datoo, N., Kawamura, A., Switzer, L., & Fehlings, D. (2014). Further evaluation of the scoring, reliability, and validity of the hypertonia assessment tool (HAT). Journal of Child Neurology, 29(4):500-504. doi: 10.1177/0883073813483903
Knights, S., Graham, N., Switzer, L., Hernandez, H., Ye, Z., Findlay, B., Xie, W., Wright, V., & Fehlings, D. (2014). An innovative cycling exergame to promote cardiovascular fitness in youth with cerebral palsy: A brief report. Developmental Neurorehabilitation, 19(2):135-40. doi:10.3109/17518423.2014.923056
MacIntosh, A., Switzer, L., Hernandex, H., Hwang, S., Jessup Schneider, A.L, Moran, D., Graham, N., & Fehlings, D. (2017). Balancing for gross motor ability in exergaming between youth with Cerebral Palsy at GMFCS levels II and III. Games for Health Journal, 6(2):104-110. doi: 10.1089/g4h.2016.0073
MacLennan, A.H., Kruer, M.C., Baynam, G., Moreno-De-Luca, A., Wilson, Y.A., Zhu, C., Wintle, R.F, Gecz, J. & member of the International Cerebral Palsy Genomics Consortium. (2018). Cerebral palsy and genomics: an international consortium. Developmental Medicine & Child Neurology, 60(2): 209-210. doi: 10.1111/dmcn.13643.
Ozel, S., Switzer, L., Macintosh, A., & Fehlings, D. (2016). Informing evidence‐based clinical practice guidelines for children with cerebral palsy at risk of osteoporosis: an update. Developmental Medicine & Child Neurology, 58(9):918-23. doi: 10.1111/dmcn.13196
Penner, M., Xie, W., Binepal, N., Switzer, L., & Fehlings, D. (2013). Characteristics of pain in children and youth with cerebral palsy. Pediatrics, 132(2):e407-13. doi: 10.1542/peds.2013-0224
Ruff, C.A., Faulkner, S.D., & Fehlings, M.G. (2013). The potential for stem cell therapies to have an impact on cerebral palsy: opportunities and limitations. Developmental Medicine and Child Neurology, 55(8):689-97. doi: 10.1111/dmcn.12166
Sachewsky, N., Azimi, A., & Morshead, C.M. (2014). Pro-survival factors derived from the embryonic brain promote adult neural stem cell survival. Stem Cells and Development, 23(20):2469-81.doi: 10.1089/scd.2013.0646
Sachewsky, N., Leeder, R., Xu, W., Rose, K.L., Yu, F., van der, Kooy D., & Morshead, C.M. (2014). Primitive Neural Stem cells in Adult Mammalian Brain Give Rise to GFAP-Expressing Neural Stem Cells. Stem Cell Reports. 2014 May: 2(6):810-24. doi: 10.1016/j.stemcr.2014.04.008
Salewski, R.P., Buttigieg, J., Mitchell, R.A., van der Kooy, D., Nagy, A., & Fehlings, M.G. (2013). The generation of definitive neural stem cells from PiggyBac transposon-induced pluripotent stem cells can be enhanced by induction of the NOTCH signaling pathway. Stem cells and development, 13;22(3):383-96. doi: 10.1089/scd.2012.0218
Schuch, C.P., Jeffers, M.S., Antonescu, S., Nguemeni, C., Gomez-Smith, M., Pereira, L.O., & Morshead, C.M., Corbett, D. (2016). Enriched rehabilitation promotes motor recovery in rats exposed to neonatal hypoxia-ischemia. Behavioural brain research. 304:42-50. doi: 10.1016/j.bbr.2016.02.010
Shevell, M., Miller, S.P., Scherer, S.W., Yager, J.Y., & Fehlings, M.G. (2011). The Cerebral Palsy Demonstration Project: a multidimensional research approach to cerebral palsy. Seminars in Pediatric Neurology, 18(1):31-9. doi: 10.1016/j.spen.2011.02.004.
Telchert, A.M., Pereira, S., Coles, B., Chaddah, R., Runciman, S., Brokhman, I., & van der Kooy, D. (2014). The neural stem cell lineage reveals novel relationships among spermatogonial germ stem cells and other pluripotent stem cells. Stem Cells Development, 23(7):767-778.
Complementary and Alternative Therapies (CAMs): What are the Issues and Why are they so Heated? – Presented by Dr. Peter Rosenbaum.
Genetic Factors in Cerebral Palsy – Presented by Dr. Richard Wintle.
Pain Prevention and Treatment in Children and Young People with Cerebral Palsy – Presented by Dr. Darcy Fehlings and Dr. Shauna Kingsnorth.
Growing up with CP: Mental health & well-being – Presented by Dr. Jan Willem Gorter, Georgia Beauchemin, Jessice Geboers, and Julia Hanes (moderator).
Communication Technology for Children with Cerebral Palsy – Presented by Dr. Johanna Geytenbeek, Danijela Grahovac, and Fanny Hotzé.
Finding Community: Social Media for Families of Children with Disabilities – Presented by Rachel Martens.
Bringing the ‘F-Words’ to Life: How are families and service providers using the ‘F-words’ in practice? – Presented by Dr. Peter Rosenbaum, Rachel Teplicky, Danijela Grahovac, and Andrea Cross (moderator).
Selective Dorsal Rhizotomy (SDR) for children with cerebral palsy in Ontario: Meet the experts – Presented by Dr. George Ibrahim, Christine Marion, Larry Marion, Dr. Golda Milo Manson, Marilyn Wright and Dr. Jan Willem Gorter (moderator).
The video titled, ‘These six F-words won’t fill up your swear jar: What do the F-words mean to youth with impairments?’ was created in partnership with Ontario youth with disabilities and with funding from the Ontario Brain Institute. http://cpnet.canchild.ca/en/resources/285-these-six-f-words-won-t-fill-up-your-swear-jar-what-do-the-f-words-mean-to-youth-with-impairments-video
The Ontario Brain Institute produced a video titled, ‘Meet Jessica,’ which tells us about cerebral palsy, some of the misconceptions that surround it, and what we can do to tackle them. http://cpnet.canchild.ca/en/resources#/?type=31&category=21#$
In collaboration with children, youth, and adults with cerebral palsy and their families, the video titled, ‘Creating Possibilities for Cerebral Palsy,’ was created and made possible through funding from the Ontario Brain Institute and a partner contribution by the Scotiabank Chair in Child Health Research held by Dr. Jan Willem Gorter. http://cpnet.canchild.ca/en/resources/290-creating-possibilities-for-cerebral-palsy-video
The video titled, ‘My Favorite Words,’ was produced by CP-NET with support from the Ontario Brain Institute. http://cpnet.canchild.ca/en/resources/291-my-favourite-words
In collaboration with children, youth, and adults with cerebral palsy and their families, the video titled, ‘Discover CP-NET,’ was created and made possible through funding from the Ontario Brain Institute and a partner contribution by the Scotiabank Chair in Child Health Research held by Dr. Jan Willem Gorter. Read resource: http://cpnet.canchild.ca/en/resources/289-discover-cp-net-video
Hyperbaric Oxygen Therapy as treatment for Cerebral Palsy. – Author: Rosenbaum, P. (2013).
Sleep Issues Among Children with Cerebral Palsy – Authors: Griffith, L., Yundt, B., & Rosenbaum, P. (2013).
How to recognize and refer children with hemiplegic (unilateral) cerebral palsy – Authors: Griffith, L., Yundt B., Fehlings, D., & Rosenbaum, P. (2013).
How does clinical research work? A two-part primer. Part 1: How to ask a research question and design a study? – Author: Rosenbaum, P. (2015).
How does clinical research work? A two-part primer. Part 2: How to do a study, and what should we measure? – Author: Rosenbaum, P. (2015).
Genomic Copy Number Variation in Cerebral Palsy – Author: Wintle, R. (2017).
Constraint-Induced Movement Therapy for children with cerebral palsy: Is there an impact on brain activity? – Author: Manning, K. (2017).
Metformin and Neural Repair in Mouse Models of Cerebral Palsy – Authors: Livingston-Thomas, J. & Morshead C. (2018).
Cerebral Palsy and Mental Health – Author: Green, A. (2018).
Should the Gross Motor Function Classification System Be Used Outside of Cerebral Palsy? – Authors: Towns, M. & Rosenbaum, P. (2018).
*Other Engagement Activities –
CP-NET Investigators/Stakeholders participated in Meet Ontario’s Brain Power Day at Queen’s Park on September 11, 2017.
American Academy for Cerebral Palsy and Developmental Medicine (AACPDM)/Pedal-with-Pete Research Grant. $24,561 USD. 2016-2017. Linking neuroplasticity with the outcomes of walking-based interventions: a feasibility trial comparing a motor learning versus a strength-based program in children with cerebral palsy. Wright, V., Chen, J.L., Fehlings, D., Hilderley, A., & Taylor, M.
Auxilium Foundation Renewal Grant. $438,000/yr. 2017-2020. deVeber, G.
Brain Canada & W Garfield Weston Foundation. $1,500,000. 2013-2016. Recruitment of endogenous neural stem cells to promote repair following acquired brain injury in children. Miller, F., Morshead, C., Frankland, P., Kaplan, D., & Mabbott, D.
Brain Canada Platform Support Grant. $1.5 million ($775k new from Brain Canada and $775k match from our own Stroke Imaging Lab for Children). 2016-2019. Canadian Paediatric Stroke Imaging Research Platform: Harnessing an International Focus. deVeber, G.
Canadian Institutes of Health Research – Operating Grant. $1,104,217. 2014-2020. Analgesia and Sedation in the Preterm Neonate: Brain Development and Outcome. Miller, S.
Canadian Institutes of Health Research – Operating Grant. $702,933. 2014-2019. Structural and functional brain connectivity in typical and atypical development. Doesburg, S., Duerden, E., Miller, S., & Pang, E.
Canadian Institutes of Health Research – Operating Grant. $1,008,288. 2015-2021. Cardiovascular physiology and brain development in neonates with congenital heart disease. Miller, S., Seed, M., Chau, V., Hickey, E., Kingdom, J., Brant, R., Sled, J., MacGowan, C., Blaser, S., Schwartz, S., & Ly, L.
Canadian Institutes of Health Research (CIHR) Research Grant. $876,150. 2014-2019. Evaluation of the Effectiveness of Robotic Gait Training and Gait-focused Physical Therapy Programs for Children and Youth with Cerebral Palsy: A Mixed Methods RCT. Wright, V., Wiart, L., Andersen, J., Fehlings, D., Gaebler-Spira, D., Levac, D., Phelan, S., & Rosychuk, R.
Canadian Institutes of Health Research (CIHR), Natural Sciences & Engineering Research Council. Collaborative Health & Research Program. $497,772. 2015-2018. Let’s Play: Design of an interactive computer play therapy platform. Biddiss, E., Fehlings, D., Graham, N., Wright, V., & Wade, S.
Canadian Institutes of Health Research Grant. $1,074,217. 2016-2020. Care.Miller S. $1,074,217
Canadian Institutes of Health Research – CHILD-BRIGHT SPOR Networks in Chronic Disease. $1,200,000. 2016-2017. A Randomized Controlled Trial Evaluating the role of Metformin to enhance Endogenous Stem Cells for Neural Repair and Enhanced Motor Function in Children born Prematurely with CP. Fehlings, D., Mabbott, D., & Miller, S.
Charitable Donation. SILC: Stroke Imaging Laboratory for Children. $1,825,000. 2014-2019. deVeber, G.
Donation in support of CP Regenerative Medicine Program. Private donor. $100,000. 2012-2014. Fehlings, M.G.
Graduate Specialization in Ultra-large-scale Software Systems. $1,650,000. 2011-2017. Cordy, J.R., Dean, T., Dingel, J., Graham, N., Hassan, A., Hassanein, H., Knight, S., Martin, M., Zhou, Y., & Zulkernine, M.
Kids Brain Health Network (formerly NeuroDevNet). $200,000/year. 2015-2018. Testing neural precursors as mediators and facilitators of constraint induced movement therapy in cerebral palsy. van der Kooy, D., Nagy, A., Morshead, C., Fehlings, M., &Fehlings, D.
Kids Brain Health Network (formerly NeuroDevNet). $204,639. 2015-2018. Neuro-Exergaming for All: Bringing Fun, Social Engagement and Physical Activity to Children with CP and Children with FASD. Graham, T.C.N., Fehlings, D., Reynolds, J., Keiver, K., Pritchard-Orr, A., van Rensburg, E., & Wickenheiser, D.
McLaughlin Centre. $96,953. 2016-2017. An Investigation of Clinically Relevant Genomic Variations in Spastic Diplegic Cerebral Palsy. Fehlings, D., & Wintle, R.
McLaughlin Centre. $60,000. 2017-2018. Accelerator Grant in Genomic Medicine: An Investigation of Clinically Relevant Genomic Variations using Whole Genome Sequencing in Individuals with Cerebral Palsy. Fehlings, D., & Wintle, R.
NSERC Discovery. Natural Sciences and Engineering Research Council of Canada. $51,000/year. 2014-2019. Chau, T.
Ontario Brain Institute. Integrated Discovery Program. $7,500,000. 2013-2018. Childhood Cerebral Palsy Integrated Neuroscience Discovery Network “CP-NET. Principle Investigator: Fehlings, D. Executive: deVeber, G., Fehlings, M., Menon, R., Rosenbaum, P., & Scherer, S. Co-investigator(s): Ansari, D., Biddiss, E., Campbell, C., Carter, M., Chau, T., Chen, R., Cheyne, D., Ferro, M., Frid, P., Gorter, J.W., Graham, N., Hall, G., Henkelman, M., Kawamura, A., Kingsnorth, S., McCormick, A., Mesterman, R., Miller, S., Morshead, C., Palisano, R., Paterson, A., Pelland, L., Raybaud, C., Samdup, D., Scott, S., Segalowitz, S., Shroff, M., Strothers, S., Taylor, M., van der Kooy, D., Wintle, R., & Wright, V.
Ontario Brain Institute. Integrated Discovery Program. $1,500,000.2011-2013. Childhood Hemiplegic Cerebral Palsy Integrated Neuroscience Discovery Network “CP-NET”. Principle Investigator: Fehlings, D. Executive: deVeber, G., Fehlings, M., Menon, R., Rosenbaum, P., & Scherer, S. Co-investigator(s): Kawamura, A., Wright, V., Biddiss, E., Chau, T., Young, N., Rosenbaum, P., Mesterman, R., Gorter, J.W., Pelland, L., Scott, S., Samdup, D., deVeber, G., Scherer, S., Taylor, M., Shroff, M., Henkelman, M., Paterson, A., Wintle, R., Fehlings, M., Chen, R., Morshead, C., van der Kooy, D., Menon, R., & Campbell, C.
Ontario Ministry of Research & Innovation. Early Researcher Award. $120,000. 2015-2019. Translating motor skills practiced in the virtual world to the real world. Biddiss, E.
The Grammy Foundation Project. $20,000. 2015. Movement through Music: Music Therapy Video Games for Rehabilitation of Children with Cerebral Palsy. Biddiss, E., Cheung, S., Chen, J., & Fehlings, D.
CP-NET uses several different methods to engage with knowledge users.
- In the 2017-18 fiscal year, the CP-NET website had 22,000 visitors (27,000 sessions) from over 100 countries
- 1,770 people have subscribed to the CP-NET Today! Newsletter
- 374 follow us on Facebook
Funding for CP-NET is provided by the Ontario Brain Institute and our partners.
CP-NET is a province-wide collaboration between:
“Physical activity was such an integral part of my development as a child. Those opportunities should be given to all children.”
Her work with CP-NET has been a key influence on Alicia Hilderley’s journey, helping shape her mindset and goals as she moves forward in her career. “As much as we’re set on prognostics and where children may end up in terms of their function, but if we don’t change things that matter to them, are we really creating meaningful change?”
Originally from Kingston and interested in the finer points of physical activity since childhood, Alicia studied Kinesiology at McGill University in Montreal for both her undergraduate and master’s degrees. Alicia was first exposed to youth with disabilities during her undergrad while completing a course called Adaptive Physical Activity, during which they were paired one-to-one with a student from the community with a disability whom they coached in physical activities that were adapted to their needs and abilities. “Though this experience,” she explains, “I was exposed to disabilities and the benefits of physical activity and the enjoyment that is available if we offer these programs.” Alicia went on to be a teaching assistant for this course during her master’s, and it was these experiences that planted the seed for her future career. “That was eye-opening for me because [physical activity] was such an integral part of my development as a child,” Alicia says. “Those opportunities should be given to all children.”
While her master’s degree was also in Kinesiology and focused on a theoretical investigation of balance and posture in able-bodied populations, Alicia began to spend her spare time in settings that allowed her to learn more about sports and disability. It was while managing the Quebec Adapted Sailing Association and volunteering as a swim aid Sunnyview Public School for children with disabilities that she says she really found her passion for adapting physical activity.
A research coordinator role at Sick Kids brought Alicia to Toronto after completing her master’s degree, but within three years she was at Holland Bloorview working under Virginia Wright with children with Cerebral Palsy. This is where, Alicia says, she became interested in investigating and developing treatment interventions for kids with CP.
Having met Darcy Fehlings through Virginia, Alicia asked them both to co-supervise her PhD in Rehabilitation Sciences at the University of Toronto. She was excitedto be trained in CP-NET’s family-centred model while “developing better ways to help everyone enjoy how they move and learn new skills and to challenge themselves in their body.”
Alicia began her PhD working on a CP-NET project that looked at the effectiveness of Lokomat robotic gait training; taking note of neuro-plasticity in children’s brains pre and post-training. As such, the first part of Alicia’s work involved a small pilot study with four children; where she quickly realized the children were more interested interventions oriented around sports skills than traditional physical therapies. With this in mind, the next step was to develop BFAST: brain change after fun, athletics sports and skill training. Functional MRIs were taken to look at neuro-plasticity before and after training, Alicia explains, “to see if we could find patterns of change that [accompanied] their motor learning.”
During the final year of study, she worked with 21 patients aged eight to 17 at GMFCS levels one and two. They took part in a randomized control trial comparing the typical strength training approach of physical therapy with that of sports skills––such as dribbling a basketball while walking. The goal was to see any difference in physical outcomes in terms of gross motor skills and brain change. While detailed results will be published at a later date, Alicia says engagement was key to improvement; younger participants were drawn in by the fun of the activities, and older participants were eager to learn new skills and motivated by the improvements they saw in themselves over time.
“The big piece there for me was to design a new intervention that was sports skill based, something that isn’t typically done in rehabilitation,” says Alicia, “and try advance our community coaching practices [to include children with CP]”
CP-NET’s collaborative network allowed Alicia to learn from fellow researchers with different approaches, but with the same goal of creating meaningful change that added depth, personality and value to her work. Her time with the network also reinforced the importance of, “bringing together the goals of the clinicians with the goals of the families and co-creating an intervention that hopefully will affect the change that all players want.”
Now in Calgary working with pediatric stroke patients to design interventions that create meaningful outcomes. Alicia says it was essential that her post-doctorate offer the same immersive, client and family-focused element as CP-NET––a goal she will carry with her throughout her career.
CP-NET Stakeholder Advisor
“… not only did they want to make a change, but they had involved a parent in the process because it was going to affect the community that I’m a part of.”
In many ways, 10-year-old Maclean is just like any other of his Grade Five peers: he loves video games and baseball, and he’s even in a rock band––The Bam Bam’s––with a group of friends from Holland Bloorview Kids Rehabilitation Hospital. Not long after being diagnosed with Cerebral Palsy, Maclean’s mother, Brenda Agnew decided she wouldn’t let his diagnosis define him.
As significant as this decision was moving forward into her son’s future, it’s ironic that it was in part a reaction against the very tool provided to give Brenda a better understanding of her son’s prognosis. The Gross Motor Function Classification System (GMFCS), initially developed by a team that included Dr. Peter Rosenbaum (CP-NET Executive Committee Member and Knowledge Translation Lead), is a clinical tool that includes infographics to illustrate five levels of motor function in children with CP. Maclean was diagnosed as functioning between Level IV and V, and Agnew recalls that Maclean’s CP diagnosis didn’t fully hit her until she saw the GMFCS graphic representing Level V. “All I saw was this picture of this kid hanging down. I was devastated.” Agnew recalls. “For me, it was a defining moment; it felt like a concrete resolution of what things were going to be like. Thankfully, I jumped up and decided I wouldn’t let that define him.”
But this illustration stayed with her over the following years, often coming up in conversations with fellow parents about their children’s GMFCS levels. She worried for other families for whom this image would also be their first introduction to CP. Levels I through IV weren’t so troubling; while it may be difficult at first, it is easier to reconcile with these images because they represent a child who, with a few adaptions, can engage with the world. Agnew’s issue was the illustration of Level V, which depicted a child either leaning forward in a wheelchair or using a head strap for support. The image did not show a child participating in his or her life. Agnew did not see any hope in these representations, and she worried that seeing them could discourage other parents from dreaming of a future for their child or working towards improved outcomes.
This important tool, otherwise a gold standard of CP clinical classification, needed an update to better reflect modern possibilities for children diagnosed at Level V.
Enter CP-NET. Agnew found the then newly-formed CP-NET through her connections at Three to Be, and now considers the work she does here to be one of her most important advocacy roles. “It’s awareness and developing resources for families. It’s the research piece. It’s bringing together all of those partners to the table,” she explains. “It’s giving parents and patients a voice.”
It was through CP-NET that Agnew began to lobby for a change to the images depicting GMFSC level V. She spoke to everyone who would listen about the need for a more positive and realistic set of images, including Dr. Rosenbaum – the very person who first introduced Brenda to the GMFSC tool after Maclean’s diagnosis
Her advocacy paid off in December 2015, when Agnew received an email from Dr. Rosenbaum that said: “Brenda, we’d love to hear your thoughts on this. Your voice has been heard.” Attached were a serious of new images from colleagues at the Royal Melbourne Hospital in Australia, who owned the copyright to the graphics. The child in these images held their head up using a modified headrest, both in their wheelchair and a tilted stander. This child looked ready to engage with the world.
The updated GMFCS tool that incorporates these graphics is now available for use around the world. Agnew says this was a life changer. It changed the way she looked at researchers, whom she’d previously viewed as disengaged scientists who didn’t listen to families and patients. “All of that went by the wayside,” she says. “I saw this document that was really important to me; that someone had listened and wanted to make a change. And not only did they want to make a change, but they had involved a parent in the process because it was going to affect the community that I’m a part of.”
This small but powerful change is just one example of how strong family partnerships are helping CP-NET drive change, while ensuring that research and tools are meeting the needs of families of children with CP. Over the next five years, Brenda looks forward to CP-NET continuing to engage and collaborate with patients and families to conduct research that motivates change, improves quality of life and furthers our knowledge and understanding of CP.
CP-NET Stakeholder Advisor
“Nothing about us, without us.”
Born in 1990 with a diagnosis placing me at GMFCS Level III, I’ve benefited from the surgical and physical therapy advancements of the time and needing the occasional accommodation; I walk with canes, chose to take an elevator over the stairs, and can walk for longer than I can stand in one place––so I appreciate when places, such as transit-stops and museums are equipped with benches. And my parents have done while to give me an as ordinary upbringing as possible: I hung out with friends, did well in school, and was expected to pull my weight with chores around the house––just like my able-bodied peers. It was never a question that I would go away for post-secondary school.
Up until my early my early 20’s, when someone asked how I would age with my CP (one of the many questions I face regularly), I was quick to assume and assure them that I’d age fine, with little unusual change to my physical condition. This response came from both youthful ignorance, and a deep-seated need to appear to the rest of the world as normal and low-maintenance as possible.
It wasn’t until I began dating and considering a future with someone, that their questions made me think more seriously about my future with CP. Would I lose my independence and become a burden? Will my life be shorter than the average person? I could have kids, right? People tend to make assumptions that are so clearly wrong, that I could easily correct or sooth. But these stopped me short of my default answer. I wasn’t sure.
I began to look for answers, aided by my journalism skills and credentials. Fast forward to fall 2016, when I finally found my perfect fit at CP-NET. I was thrilled to have found an organization that gives individuals, families, doctors and clinicians a voice in the quest to improve the quality of life of those of us with CP.
I immediately reached out and soon after welcomed to the Stakeholder Committee as a valued youth voice. At the same time, I also joined the MyStory Project, a research study taking a multifaceted look at the lives of 16 to 30 year old’s with CP.
In the past year and a half, I’ve participated in the Transitions Stakeholder Alliance Meeting; helped plan Science and Family Day; collaborated on a ground-breaking F-words video; and, attended the Brain-Child-Partners Conference.
Not only has CP-NET enabled me to be the difference I want to see in the world, but the community has helped me begin to be the person I want to become. I can’t wait to see and be a part of what comes next from CP-NET: Nothing about us, without us.
Working Together Towards the Next Phase of CP-NET
“This was a really partnership and collaborative project that was representative of all the people: researchers, clinicians, patients and parents, and what was going to be important to all of them.” – Brenda Agnew, CP-NET Stakeholder Advisor
Stakeholder engagement is at the core of everything we do at CP-NET. So, when it came time to plan for the next phase of CP-NET research, it was only natural to reach out to the community for guidance on how to move forward.
Building on a successful activity carried out by researchers in Australia, a survey was drafted that invited people with CP, families and stakeholders of the CP-NET community to their personal priorities for future studies. A planning committee representing families, youth, partner organizations, researchers and CP-NET leadership consulted on the process.
Brenda Agnew, a member of the planning committee, points out that research is often planned from the top down, without checking in with the community to find out what would make a difference in the lives of patients and their families. “This was a really partnership and collaborative project that was representative of all the people: researchers, clinicians, patients and parents, and what was going to be important to all of them,” Brenda explains.
The online survey was circulated throughout the CP-NET, Parent Advocacy Link (PAL) and the Ontario Federation for Cerebral Palsy (OFCP) communities. Three questions emerged as being of top priority:
What factors have the greatest impact on improving the lifestyle and quality of life of individuals with CP?
How does the developing brain repair injuries?
And, what are the optimal treatments for CP?
Individuals with CP and their families were invited to fill out the survey live as part of the CP-NET Science and Family Day 2016 event. Confirming findings from the broader survey process, the same three questions came out on top.
Given that the CP-NET research agenda is strongly rooted in stakeholder feedback, the top three priorities were immediately woven into future plans and platforms:
The Wellness Platform is aiming to better understand the impact of chronic pain and mental health with the ultimate goal of improving quality of life and wellness; the NeuroTechnology and Therapeutics Platforms are innovating and evaluating various treatments and interventions for individuals with CP; and the Neural Mechanisms of Brain Repair and Genomics & Epigenetic Platforms are elucidating the mechanisms behind the CP brain and development to optimize opportunities for brain repair and plasticity.
A founding partner of CP-NET, The Ontario Brain Institute (OBI) also places critical importance and influence on their relationships with individuals and families living with brain-based disorders. “The priority setting survey completed by CP-NET was an example of the type of community engagement activity OBI supports in service of this goal,” says Tom Mikkelson, president and scientific director of OBI. “By leveraging research questions identified by a previous stakeholder prioritization study, CP-NET was able to rapidly engage the community in ranking research questions for future studies.”
Armed with these priorities, CP-NET has and will continue to operate by a simple mantra: Nothing about us, without us.
World CP Day