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By Matt Samuelson 14 Mar, 2024
Informed, Educated & Empowered: What Do We Know About Cerebral Palsy and Where Our Knowledge Should Lead Us From Awareness To Action Jess Silver Both the delivery and receipt of medical diagnosis is overwhelming and daunting. For both the medical professional or clinician and/ or practitioner, as well as the individual and their support system, it’s most important to understand that being informed and having a broad scope of the definition of a condition and ways to manage it, is most central. What is known about Cerebral Palsy is that it is considered to be the most common neurological condition that babies are born with, but it can also occur later in the early stages of childhood development. It most commonly occurs because of a lack of oxygen and blood supply to the cerebral cortex, and it is non-progressive in the way of degeneration, meaning that it is not a disease or disorder that one would succumb to. According to the Journal of Pediatrics of India and an article entitled “Cerebral Palsy- definition, classification, etiology and early diagnosis”, the condition may present itself in many clinic spectra”, and a lot of the time the cause isn’t easily identifiable. It is also known that there are varying types, such as spastic diplegia, dyskinetic, athetoid and hemiplegic. Due to the fact that there are varying types and the truth that every individual is unique and has different characteristics in addition to the way that the level of impairment has impacted them, it is to be understood that across lifespan one individual’s management will also be different from another. What most of society learns to understand about a condition that is commonly a physical disability like CP is through an experience with an individual who lives with it, or what is published through research to the mainstream, but this knowledge base could often be generalized and informed by preconceived notions. Currently our society is one that should be prompted to move from awareness to action—action that perceives a physical challenge as limiting in varying ways, but not as defining of an individual and their characteristics as a person and what they contribute to society moving forward. It is important for the understandings of management to move from a measure of comfort and solely providing assistive equipment to support the individual to by contrast an attitude that considers the individual’s own desires for their highest quality of life along with their support networks, and one where they [the individual] are empowered to contribute new perspectives to Diversity, Equity and Inclusion (DEI) where others don’t solely check boxes stating that they know of an experience like that of an individual with CP, unless that awareness is developed through interaction with them. Prior decades in clinical research most predominantly in North America asserted interventions of orthopedics (bracing), physiotherapy, occupational therapy, spasticity management medications and surgery to be the ones most actively considered in CP management, however now it is time to shift the educational and awareness paradigm to be more non-linear one, where many unique approaches to clinical, whole-person and whole health are prioritized and where considerations of the impact of activities such as recreation, adaptive fitness and sport are more deeply understood and applied to harnessing strategies and perspectives for CP management. This March 25 th on National CP Awareness Day, lets lead from true informed awareness to create change.
By Matt Samuelson 26 Feb, 2024
Participate in Research! Youth and Clinicians - Expanding digital access and employment readiness through a personalizable access technology: SwitchApp Are you a 16 to 30 year old who uses access technologies to communicate or an OT or SLP who supports youth with complex communication needs? You might be interested in participating in this study at Holland Bloorview Kids Rehabilitation Hospital. Please see our webpages for more information! Youth Webpage: https://research.hollandbloorview.ca/evaluating-personalizable-access-technology-switchapp-youth Clinicians Webpage: https://research.hollandbloorview.ca/evaluating-personalizable-access-technology-switchapp-clinicians What is SwitchApp? SwitchApp is an access technology that users and caregivers can set up easily at home. It recognizes the user’s words, sounds and facial movements, and uses them to control a computer or tablet. SwitchApp evolves so it can continue to recognize these cues if the user’s speech and movements change over time! What is this study? In this study, we would like your help testing the performance of a new version of SwitchApp. We are interested in how well SwitchApp works, how easy it is to use, and how much people like to use it. This information will help us improve the access technology for many different users. Who can participate? Youth between 16 and 30 years old who: - have a motor impairment preventing you from using standard technology interfaces (e.g. mouse, keyboard, touchscreen), - currently use an access technology (e.g., a switch or joystick) to communicate and/or write in an independent, functional, and regular manner (at least 3 times a week), - can consistently control facial movements and/or produce a few keywords or sounds, - have a caregiver, family member, or friend who will also participate. AND Clinicians who: - are certified occupational therapists or speech language pathologists, - have at least 1 year of experience supporting the youth described above, - have at least 1 year of experience supporting access technologies and high-tech augmented and alternative communication and/or writing aids. What’s involved? For Youth: 1. Three visits to Holland Bloorview to personalize and test how SwitchApp works. You will use it to complete employment-related tasks (e.g., opening programs on a computer, typing a short text) (1-2 hours), 2. A follow-up interview to talk about your feedback and opinions of SwitchApp (45 mins). For Clinicians: 1. One visit to Holland Bloorview to fill two questionnaires, and test SwitchApp by setting up and personalizing it (1.5-2 hours), 2. A follow-up interview to talk about your feedback and opinions of SwitchApp (45 mins). Contact us!  If you think this might be interesting to you or someone you know, or if you have any questions, please feel free to contact our research team: Fanny Hotzé PRISM Lab, Bloorview Research Institute fhotze@hollandbloorview.ca 416-425-6220 ext. 6459
By Matt Samuelson 21 Feb, 2024
Jess Silver A diagnosis of Cerebral Palsy (CP) is both complex and multifaceted for every person who is part of what is often referred to as the care pathway; it is complex and diverse for the clinicians to understand and to suggest interventions for management, because it is uniquely presented in each individual, and it is even more challenging for the individual with the condition to navigate through as well as for their support system. One of the aspects that make knowing what to do when, in order to manage it, most challenging is, the fact that conventional approaches to therapy measure specific motor and muscular function and milestones in accordance with the GMFCS 1-5 scale and in addition to this in North America, and specifically Canada; the system of health governance puts limitations on access to therapies and technological interventions. One of the most important ideas that one should understand in order to manage CP across lifespan is to take a broad-spectrum approach to learning of interventions and further to that, applying them. Recent research has shown that there is an increased level of attention that needs to be allocated to the patient's personal experience, needs and perspective in order to successfully help them learn about different and new approaches to managing CP. A qualitative study from the Journal of Disability and Rehabilitation entitled Perspectives of children and adolescents with Cerebral Palsy about involvement as research partners by C. Cavens, C. Imms et al. stated that, “Children and adolescents with cerebral palsy have the opportunity to influence research that directly impacts them. They also are interested in research partnerships that foster flexibility and open communication.” Understanding adaptive fitness and sport as novel ways to manage CP, presents the individual with more diverse ways to be active, promotes independence and allows for them to excel at other things in their life. It’s important first to define adaptive fitness both for individuals and clinicians and practitioners, in order to meaningfully understand its role in amplifying quality of life. Practicing adaptive fitness can be defined as an approach to exercise that considers and accommodates the needs of individuals with varying abilities, whether the limitations are physical, cognitive, or multifactorial in nature. It is most effective in addressing varying needs when it is helpful to be done consistently in conjunction with other therapeutic treatments (physiotherapy, chiropractic care, massage or FST and sport skill- based training.) The fundamental overarching principle that clinicians and medical professionals should apply to how they perceive the management of CP, is that it is crucial for the programming to both address the individual’s limitations to achieve progressive improvement, but also to challenge the client or participant to engage in multi-plane movements, and aspects of mental toughness techniques, when applicable. Individuals that have CP should aim to understand and approach managing their condition by combining different therapeutic and medical approaches. Engaging in adaptive fitness one would be able to:  Work with a professional on individualized goals that are both skill and functional movement based Be in an environment where they would be challenged, both by exercise equipment and through the programming Learn of fundamentals to building mental toughness and resilience that are central to developing physical improvement and building increased independence. The most important aspect of Cerebral Palsy for both a clinician, therapeutic practitioner, and the individual alike to know, is that the condition is not neurodegenerative but the way that it is presented is different for everyone and it changes over time as an individual ages. In order for one to have the highest, most fulfilling quality of life, it is most important to have or to develop a strong and cohesive network of multidisciplinary professionals that are qualified in working with them for rehabilitation and adaptive fitness. The concept that adaptive fitness presents one with a more diverse and engaging way to manage CP is what also creates the opportunity for developing meaningful potential throughout life.
By Matt Samuelson 16 Feb, 2024
https://vimeo.com/856247704 "Feelings of Invisibility," an award-winning short documentary by Charmaine Lewis, offers an intimate glimpse into Anne's remarkable journey. Through her art, Anne challenges societal misconceptions about disability, exploring themes of visibility, love, loss, and the universal desire for connection. Her artwork and her story serve as powerful reminders of the capacity for the human spirit to overcome and flourish. Today, Anne Abbott is not only a celebrated artist but also a vibrant advocate for those with communication disabilities. With every piece of artwork sold at St. Lawrence Market or through her business, Annie’s Dandy Note Cards and Artwork, Anne reiterates her message of hope, inclusivity, and the transformative power of self-expression. Join us as we celebrate Anne Abbott, her art, her activism, and her indomitable spirit. Her journey reminds us that creativity knows no bounds and that every voice, no matter how it speaks, deserves to be heard. A message from Anne: My name is Anne Abbott. I was born in 1958 with a condition called Cerebral Palsy. However, it was a year later, just after I had my first birthday, when the doctors officially confirmed that I, indeed, had C.P. I’ve often wondered if the delay of the diagnosis was due to the kind of kid I was. My mother used to tell me that right from the very start I had such incredible determination and endless energy. On the day of my christening, I consistently played with the pages of the Bible and the minister’s cross. At the doctor’s office, on the day he was attempting to tell my mother that I had Cerebral Palsy, I kept trying to pull away from her grip in order to grab a pen from the desk between them. The doctor, exasperated, asked my mother, “Where does she get her determination from? You, or her old man?” As a toddler, during nighttime prayers, my mother would always say, “Please, God, help Annie walk and talk.” It was here that I would move my legs under the covers in a running motion, signalling to my mother that I wanted her to add, “and run and play.” I wanted to run and play just like my brother and his friends did. Certainly, I was included in all of their games, but I wanted to climb trees and get skinned knees myself. I had so many dreams and schemes for the future when I was a child. I wanted to be a doctor, an actress, a dancer, a writer, an artist. I wanted to move out when I was older, get married and have children of my own - just like everyone else! Sadly, though, as time went by, perhaps because of societal ableism or my own teenage self-loathing, I didn’t follow through with a lot of my dreams. And yet, my determination and energy have never wavered in the things that truly matter to me. Art and writing were, and are, of the utmost importance. As a person who is nonverbal, expressing myself has been absolutely crucial to my survival and psyche. By communicating my thoughts and feelings, upon either canvas or tablet, I feel understood and heard. If you have watched the biographical short documentary “Feelings of Invisibility “(produced by Charmaine Lewis), you’ll know that. I did move out on my own and married a wonderful man named Rob. Oh yes, and I started my own art business called Annie’s Dandy Note Cards and Artwork. I’ve been selling my artwork every Saturday at the St. Lawrence Market for 22 years. I’m also a member of the Canadian Communication Access Alliance, which focuses on the rights of people with communication disabilities.
By Matt Samuelson 17 Jan, 2024
As we say goodbye to 2023 it is with a renewed sense of optimism and commitment that we welcome 2024.  This year, the OFCP has seen significant changes in the lives of our members. Covid seems both a distant past and also an ever present reality. Our members have proven their resiliency and strength in managing changes in their school, employment, service provision and sometimes even their own health. In 2023. The OFCP funded over 192 of our members, allocating funds that allowed them access to mobility and adaptive equipment, as well as $74,331 of funds dispensed for life enriching activities. These dollars were essential to enabling members to remain independent, active and feeling safe. Throughout the year, charities continued to face the challenge of having to do more with less. Rising food costs, housing increases and the cost of living sometimes makes it difficult to donate to any charity. If a monetary donation is too difficult, we ask our donors to consider donating their used clothing to cp4cp, which is our household pick up services organization. Every dollar raised goes to supporting our members. It is a wonderful way to support our purpose, while decluttering and feeling good about your space! As we move into 2024, the OFCP is looking forward to continue supporting our members in supporting independence, inclusion, choice and full integration of all persons with cerebral palsy. Sincerely, Bobbi Moore, President
By Matt Samuelson 04 Jan, 2024
Hi, We are seeking help recruiting parents of youth with either autism and/or an intellectual disability for our online survey on family quality of life during the transition to adulthood. Currently, we know very little about the transitional period for these youth. We are hoping to address this knowledge gap and provide rationale for the implementation of transition planning programs for youth with developmental disabilities in Canada. We would appreciate it if you could share the information below with anyone you think meets the criteria for the study. Please feel free to share the information in any way you feel is best for your organization (e.g., e-mail, newsletters, bulletin boards, social media, etc.). For your convenience, I have also attached a pdf poster that can be emailed or printed. If you have any questions about the study, please do not hesitate to contact the principal investigator, Lindsey McCullough, at unbtransitionstudy@outlook.com . This project has been reviewed by the UNB Research Ethics Board and is on file as REB 2023-151. Link to survey: https://unbfpsyc.ca1.qualtrics.com/jfe/form/SV_eXV145qwfqoQsPs Sincerely, Lindsey
By Matt Samuelson 21 Dec, 2023
Hello, My name is Bobbi Moore. I am the President of OFCP (Ontario Federation For Cerebral Palsy). Today, I write to you as a member of the organization. OFCP has been a well-known charity for many years. It is a very important part of the lives of many people with cerebral palsy and their families. OFCP provides information and counsel to parents that have a child with cerebral palsy. Parents can expect a welcoming and supportive environment where they can get valuable information that will assist and support themselves and their child. We offer a number of funding opportunities as well. When there is a need for equipment or home modifications that aren't covered by any other service, OFCP will aid in providing assistance. We also have a funding source called The Life Enriching Activity Fund, known as LEAF. It can be used for any opportunity that would help to enrich the life of our members. It can be for school support, a fun activity, or even hiring an attendant to go on a vacation. I can speak for this fund myself. It provided me with the opportunity of a lifetime, when I was able to go on vacation and enjoy the dolphin experience of my dreams. It meant more to me than I can say. OFCP also provides awards and scholarships to people that have dreams of furthering their education and people that are providing exemplary service to those with cerebral palsy. I am proud to be a member and to be the President of this very important organization. There are many ways to help our organization continue this very important work. It is my hope that you will consider donating funds, gently used items, clothes, or even your time as a volunteer. This will go a long way in assisting our wonderful organization, so that it can continue on for many more years, enriching the lives of people with cerebral palsy and their families. I thank you very much for considering this request. Sincerely, Bobbi Moore, President As we approach the end of the year, we are gearing up for new initiatives and programs that will further enhance our ability to provide vital support and resources to those in need. Your contribution, no matter the size, will make a meaningful difference in the lives of our members. Together, we can create a more inclusive and supportive community for individuals with cerebral palsy and their families. Donate Now: https://www.ofcp.ca/donate-to-ofcp Ontario Federation For Cerebral Palsy 1-877-244-9686 (Ontario only) info@ofcp.ca 4211 Yonge Street, Suite 316 Toronto, Ontario M2P 2A9
Newly Appointed CEO Lori Holloway smiling in front of a brick wall .
27 Nov, 2023
We are thrilled to announce the newest addition to our leadership team at the Ontario Federation for Cerebral Palsy. Please join us in extending a warm welcome to our newly appointed CEO, Lori Holloway.
Federated Health Charities Logo - Green, Pink, Red, Blue string loops side by side
28 Aug, 2023
Ontario Federation for Cerebral Palsy (OFCP) has been one of the charities lucky enough to receive funds from the Federated Health Charities campaign for 27 years now.
Support Worker with teenage child with CP reading a book.
By javier vivanco 23 Aug, 2022
IMPORTANT ANNOUNCEMENT to all parents who have a child who has cerebral palsy and is attending a school in Ontario, regarding representation on Special Education Advisory Committees (SEAC).
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