Meet Lena Faust, National Youth Advisory Panel Member

We are thrilled to introduce the newest member of our National Youth Advisory Panel. To read more about this panel and its mandate, click here.

Lena Faust, 25

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WHAT ARE YOU STUDYING AND/OR WHAT ARE YOUR PROFESSIONAL AMBITIONS?

I am a Ph.D. student at McGill University and the McGill International Tuberculosis Centre. My research interests are in the area of infectious disease epidemiology, and my doctoral work will focus on tuberculosis (TB). TB is a disease I am particularly passionate about, as it is responsible for more deaths globally than any other infectious disease today, and its persistence underlines the deplorable disparities in health that we continue to see. I hope to continue working in this area, with the goal of producing research that facilitates evidence-based policymaking for infectious disease control and prevention.

WHAT ARE YOUR PASSIONS, INTERESTS, AND HOBBIES?

I love spending time outdoors, and particularly enjoy hiking, skiing and scuba diving. I am also happy to say that I am currently training for my first half-marathon, which I will be running on September 22, 2019, in support of the Canadian Cerebral Palsy Registry.  

CAN YOU TELL US ABOUT YOUR EXPERIENCE WITH BRAIN-BASED DEVELOPMENTAL DISABILITIES?

I have mild spastic cerebral palsy (CP). From struggling with walking stairs to now being able to enjoy skiing and training for a half-marathon, I have to say that my experience with this condition has been that I have come to see it not as a weakness but as a testament to the importance of determination, and above all as a motivation to always continue pushing my own limits. This is a perspective that I have since tried to apply as much as possible not only in terms of physical activities, but also in my academic pursuits.

WHY DID YOU WANT TO GET INVOLVED WITH CHILD-BRIGHT?

I consider the involvement of patients in shaping research priorities and the manner in which research is conducted as crucial to ensuring that patients actually benefit as much as possible from it. I think this is particularly important in the case of conditions such as cerebral palsy and other brain-based disabilities, which have a wide range of manifestations, meaning that patients have a variety of differing challenges, and in turn benefit from different types of interventions. I was therefore extremely glad to hear about the level of patient-centered work being done at CHILD-BRIGHT and was enthusiastic to get involved.

WHAT ARE YOUR HOPES FOR THE NATIONAL YOUTH ADVISORY PANEL?

By bringing together a diverse group of young adults with brain-based developmental disabilities, I hope that the panel will become a valuable platform that helps shape the research process in this field. I am immensely grateful for the support I have received in different ways throughout my life to help me achieve my goals—with, and despite—my disability, and it is therefore my hope that the input of the panel can contribute to give children with brain-based developmental disabilities not only an improved quality of life, but also the support that best allows them to reach their personal goals.

Bill C-81 is in, and we can make it count for children and families!

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By Keiko Shikako-Thomas, CHILD-BRIGHT Knowledge Translation Program Co-Lead
 

Bill C-81, also known as the Accessible Canada Act, was approved last week by the House of Commons following a process which was started by the federal government in 2015, when it was referenced in the mandate letter of the Minister of Persons with Disabilities and Sports. This bill helps shift the culture relating to accessibility in Canada and includes important provisions to ensure that persons with disabilities can access their human rights and enjoy full citizenship.

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At CHILD-BRIGHT we are excited to witness the passing of this bill alongside other Canadians. As a pan-Canadian patient-oriented research network, we have been collaborating with youth and families of children with brain-based developmental disabilities from across Canada since 2016 to identify their priorities and learn what they think should be priorities in Canadian research. We have developed partnerships to generate research that will have an impact on the way children and youth with disabilities enjoy their right to health and quality of life.

Similar to our stakeholder engagement process at CHILD-BRIGHT, the Bill C-81 process engaged a series of stakeholders along the way, and reflects priorities identified by Canadians collected during their stakeholder consultation phase, during public forums, youth summits, and via online opinion polls.

We see the passing of this bill as a huge step forward for our community, but by nature of its federal reach, remain aware that it has limited impact for CHILD-BRIGHT’s core population: children.

Will the bill have benefits for children with disabilities and their families?

To me, the passing of Bill C-81 not only underlines Canada’s recognition of the rights of individuals with disabilities, but also represents a genuine commitment to working towards equity of opportunity.
— Lena Faust, CHILD-BRIGHT Youth & Network Member

Yes! But because Bill C-81 covers aspects of federal jurisdiction, such as transportation, mass communication, and the use of official languages (American Sign Language [ASL] and Quebec Sign Language [LSQ] have now been recognized as official languages in Canada)—all of which impact both children and adults positively—some of the issues that touch children with disabilities more directly, such as health care, education, and leisure, are not covered, since these fall under provincial jurisdiction. 

Hopefully the passing of the first-ever legislation to support accessibility helps to facilitate the creation and implementation of robust accessibility laws at all levels of government. As an adult with a disability who has been waiting eagerly for this legislation, I see this as a huge step!
— Julia Hanes, CHILD-BRIGHT Youth & Patient-Partner

Progress is being made but there is still much work to be done. We are grateful that the passing of Bill C-81 creates a better space for ongoing discussions and opportunities to put disabilities at the forefront of public discourse. For our CHILD-BRIGHT members, families, youth, researchers, and clinicians, the new law allows more space for interactions with decision makers and an opportunity for us to continue to advocate for the changes we need—and want to see—in the lives of children with disabilities and their families.

By embedding accessibility into the operations of the federal government and all of its programs, our son will be able to exercise his full citizenship. As a key partner in care, the federal government will ensure that our family will have easier access to the essential programs that support us.
— Donna Thompson, CHILD-BRIGHT Patient-Partner

For example, Bill C-81 proposes the creation of an Accessibility Officer position. This person would liaise between persons with disabilities and government. It also proposes adaptations of public buildings to respond to universal accessibility codes. And most importantly, it marks an important historic and cultural shift relating to accessibility rights in Canada, and inclusion for all persons with disabilities.

This is why CHILD-BRIGHT is starting work on the creation of a Policy Hub for childhood disabilities. Through ‘the Hub’, we will seek to gather the unique contributions of families, children, and youth with disabilities, and align this with research evidence, to help influence policy developments that are relevant for children with disabilities in Canada. We want to get the conversation started between policy makers and our CHILD-BRIGHT community and, hopefully, help provide information that will support the inclusion of children and families’ needs as the new bill is implemented in the coming years. More to come on this initiative in future months.

We’re excited to be part of the change we want to see in Canada and in the lives of Canadians with disabilities of all ages. We know that a strategic partnership between researchers, policy makers and concerned members of the community can build a new culture of accessibility in Canada that includes children, and that change can begin today.

For a plain language explanation of the bill, please visit:
https://www.include-me.ca/federal-accessibility-legislation-alliance/resource/accessible-canada-act-plain-language

For the full text of Bill C-81, visit:
https://openparliament.ca/bills/42-1/C-81/

If you want to learn more and participate in the development of the CHILD-BRIGHT Policy Hub in Childhood Disabilities, please contact:
Roberta.cardoso@muhc.mcgill.ca

The proposed accessible Canada act sets out to change that [the presence of barriers for people with disabilities] and create a Canada that is inclusive and accessible for everyone from the get-go. Canadians with disabilities are tired of being treated as an afterthought. This is what Bill C-81 sets out to do: to transform our perceptions of disability and ensure accessibility and inclusion from the start.
— Marc Garneau, Minister of Transport and MP for Notre-Dame-de-Grâce – Westmount (also home to our CHILD-BRIGHT headquarters). Full statement: https://openparliament.ca/bills/42-1/C-81/

Partnering to Support Ontario First Nation Communities

Partnering to Support Ontario First Nation Communities
CHILD-BRIGHT announces new network project to better support children with prenatal opioid exposure and their families

The CHILD-BRIGHT Network is pleased to announce funding for a thirteenth project: Prenatal Opioid Exposure and Neonatal Abstinence Syndrome: A Research Project with Indigenous Peoples in Ontario First Nations. This new network project joins our BRIGHT Beginnings research theme, which funds projects that aim to optimize brain and developmental outcomes.

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The project comes from a need identified by First Nation communities in Ontario and is led by CHILD-BRIGHT Principal Investigators Astrid Guttmann, Chief Science Officer at ICES and paediatrician at The Hospital for Sick Children; Serene Kerpan, Assistant Professor, Faculty of Health Sciences at the University of Ontario Institute of Technology (UOIT); and Jennifer Walker, Canada Research Chair in Indigenous Health at Laurentian University and Indigenous Health Lead at ICES along with individual community leaders and the Southern Ontario Community Wellness Development Team (CWDT).

 
Astrid Guttmann

Astrid Guttmann

Serene Kerpan

Serene Kerpan

Jennifer Walker

Jennifer Walker

 

“In 2017, the CWDT team was contacted by First Nations who were concerned about the health of school-aged children with prenatal opioid exposure in their communities,” says Brenda Johnson, Mental Health Facilitator at the CWDT. “We approached ICES for information and support. From this came the development of a partnership between the CWDT, researchers at ICES and UOIT, and professionals who have experience working with Indigenous communities on complex health research topics.”

Neonatal abstinence syndrome (NAS) is a withdrawal syndrome observed in the babies of individuals who either used opioids or were treated for opioid dependence during pregnancy. Prenatal opioid exposure has risen substantially over the past two decades and can have lasting health impacts for infants and children, including potential long-term neurodevelopmental impairments such as cognitive, motor and/or social developmental impairments.

“By working closely with First Nation communities, we strive to better understand prenatal opioid exposure so that future community- and culturally-appropriate interventions can be developed to better support children with prenatal opioid exposure and their families.”
— Jennifer Walker. 

The team, which is composed of researchers, community leaders, and  community partners, is working in partnership to achieve this by:

  1. Building strong relationships with First Nation communities in the Southern Ontario CWDT catchment area

  2. Investigating prenatal opioid exposure and its longer-term neurodevelopmental impairments

  3. Gathering data from the community, including culturally-specific data, in anticipation of the co-development of a community-based intervention to address the longer-term child and family impact of prenatal opioid exposure.

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In June 2018, communities were invited to attend one of two community-based facilitated information and planning sessions, held respectively in Rama and London, Ontario. A total of 56 delegates from 23 Ontario First Nation communities attended, and teleconference presentations held in the fall of 2018 helped the team reach a total of 33 First Nation communities within the CWDT catchment area. To date, 11 communities have confirmed their participation in the project.

Communities will have the opportunity to participate in one or both arms of the project:

  1. Qualitative research to better understand prenatal opioid exposure through focus groups and individual interviews, and/or

  2. Quantitative research to determine the incidence rates and trends over time of prenatal opioid exposure and neonatal abstinence syndrome at a community level and aggregated for all participating communities.  

“We are happy to welcome the Prenatal Opioid Exposure and Neonatal Abstinence Syndrome team to CHILD-BRIGHT and value the perspective and approach to patient-oriented research that their team brings,” says Frank Gavin, Director of Citizen Engagement at CHILD-BRIGHT. “Often in patient-oriented research, engagement is initiated by researchers, but in this team’s case, the research project was developed in response to First Nation communities seeking to better understand and meet the needs of children with prenatal opioid exposure. Community members initiated and continue to inform the project. We value this approach as well as the wisdom and the knowledge that this team will bring to CHILD-BRIGHT.”

For more information on this project, contact:
Aggie Mazzucco
Project Manager & Research Coordinator
Email

Helping Match UBC Students to Patient-Oriented Initiatives

As part of our efforts to enhance the capacity for patient-oriented research through practical research experience at academic institutions, we are proud to share that with the support of the BC SUPPORT Unit, we have developed the Patient-oriented Research Repository (PoRR) at the University of British Columbia (UBC). This initiative is possible thanks to funding from UBC’s Strategic Investment Fund.

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“PoRR is a matchmaking platform that will help connect UBC students with an array of available patient-oriented research (POR) opportunities affiliated to UBC,” says Pierre Zwiegers, CHILD-BRIGHT Training Program Coordinator. “It will support local investigators in hiring undergraduate assistants throughout an academic term.

CHILD-BRIGHT’s Training Program team will support the development and maintenance of the online PoRR matchmaking platform and will help train students in POR using CHILD-BRIGHT’s introductory POR training modules, which were initially designed and presented as part of CHILD-BRIGHT’s Summer Studentship Program.

“By providing UBC students with experiential and practical learning opportunities in patient-oriented research settings, we will help increase their knowledge, understanding and skills relating to patient-oriented research,” says Zwiegers. “This will enable these students, who are Canada’s next generation of researchers, clinicians, and health care decision makers, to adapt to a rapidly evolving health research environment.”

After assessing the uptake and response to the UBC PoRR initiative, CHILD-BRIGHT hopes to pursue similar opportunities and partnerships at other academic institutions across Canada.

For more information about the PoRR, contact porr@cmmt.ubc.ca.

Announcing the Winners of our 2019 KT Innovation Incubator Competition

We are pleased to announce the two winning teams of our 2019 CHILD-BRIGHT KT Innovation Incubator competition: the Making Sense of Connectedness team and the Ready 2 Work team. Read more about both teams below.

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The Making Sense of Connectedness project is led by Natalie Miyake (Autism Advocate/Parent, West Island Association for the Intellectually Handicapped), Dr. Melissa Park (Principal Investigator, Participatory Research / School of Physical & Occupational Therapy at McGill University), Caitlin Bard (Autism Advocate/Student), Lyne Charlebois (Executive Director of West Island Association for the Intellectually Handicapped), Anabel Sinn (Principal Designer, Connected Narratives) and Casey Vormer (Autism Advocate/Artist, Project Coordinator).  

Meet the team here:

Natalie Miyake

Natalie Miyake

Dr. Melissa Park

Dr. Melissa Park

Caitlin Bard

Caitlin Bard

Anabel Sinn

Anabel Sinn

Casey Vormer

Casey Vormer

 

What is Making Sense of Connectedness?

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The Making Sense of Connectedness team will use the KT Innovation Incubator grant to give neurodiverse children and youth, as well as their families, the opportunity to build an online hub of sensory environments in Montreal to engage the public about the impact of these sensory spaces on the learning, health, and well-being of neurodiverse children and their families.

More specifically, the team will:

  • Place children/youth on the autism spectrum and their families at the centre of the project to co-create initiatives that will change everyday sensory spaces based on their experiential knowledge

  • Collaborate with children/youth on the spectrum to represent messages and important themes, which will be accessed on the online platform

  • Use ethnographic methods (e.g., photographs, mini-films, stories, fieldnotes of participant observations) to document the process of engaging the public, co-designing and evaluating initiatives.

This is an innovative project that aims to modify sensory environments in health care and commercial settings and that will be co-led by people with autism spectrum disorder (ASD) and family members of children/youth with brain-based developmental disabilities. They will document the process through ethnographic methods to better record their different approaches at engaging the public in collaboratively creating and implementing child and youth-led initiatives to help create these neurodiverse-friendly environments.

“Our work as part of the Making Sense of Connectedness project will transform the ways in which we respond to and collaboratively take action led by the experiential knowledge of neurodiverse children and youth. Our project is about potentiality and we are thrilled that CHILD-BRIGHT both understands and stands behind the potentiality of citizen engagement.”
— Melissa Park, Principal Investigator

This team’s partnership was established in April 2015 when Dr. Melissa Park and Natalie Miyake (Former Board Member of West Island Association for the Intellectually Handicapped) met with families with children diagnosed with autism. The participatory research project at the time provided children and their families an opportunity to take photos and videos of places where they experienced social inclusion/exclusion, with particular emphasis on sensory supports and barriers in those spaces. The team has since grown to include more autism advocates and artists to support the infrastructure for photographs, mini-films and stories of neurodiverse children and youth. 

The grant was funded by a McGill Social Sciences & Humanities Development Grant 2014  Making sense of social inclusion: An exploratory photo-ethnographic and participatory study of the experiences of children with autism and their families in the community.  Our aim was to understand the sensory experiences of children diagnosed with autism and their families in public spaces; and how they make sense of, and develop strategies to promote, experiences of social-spatial inclusion.

The grant was funded by a McGill Social Sciences & Humanities Development Grant 2014 Making sense of social inclusion: An exploratory photo-ethnographic and participatory study of the experiences of children with autism and their families in the community. Our aim was to understand the sensory experiences of children diagnosed with autism and their families in public spaces; and how they make sense of, and develop strategies to promote, experiences of social-spatial inclusion.

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The Ready 2 Work project is led by Dr. Priscilla Burnham Riosa (Principal Investigator, Department of Applied Disability Studies at Brock University), Lisa Whittingham (PhD Student), Courtney Bishop (PhD Student), Nickolas Kenyeres (Technology Specialist), Dr. Briano De Rezze (Collaborator, School of Rehabilitation Science at McMaster University), Dr. Wendy Roberts (Collaborator, Integrated Services for Autism and Neurodevelopmental Disorders) and Neil Walker (York ASD Partnership Project Liaison/Coordinator).   

Meet the team here:

 
Dr. Priscilla Burnham Riosa

Dr. Priscilla Burnham Riosa

Lisa Whittingham

Lisa Whittingham

Courtney Bishop

Courtney Bishop

Nickolas Kenyeres

Nickolas Kenyeres

 
 
Dr. Briano De Rezze

Dr. Briano De Rezze

Dr. Wendy Roberts

Dr. Wendy Roberts

Neil Walker

Neil Walker

 

What is Ready 2 Work?

The Ready 2 Work team will use the KT Innovation Incubator grant to develop and pilot an online vocational/employment readiness platform alongside self-advocates with autism spectrum disorder (ASD), their families, and professionals who operate vocational programs for people with ASD.

More specifically, the team will:

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  • Conduct focus groups with key stakeholders (people with ASD, their families, and program leaders from relevant vocational/employment organizations) about the needs of job seekers with ASD

  • Develop and test the online platform with ongoing feedback from key stakeholders to ensure that the hub stays relevant for end users

  • Pilot the finalized platform with end users both involved and not involved in the previous project phases to evaluate the overall experience and perceived utility of the tool.

The project is motivated by both the importance of vocational and employment success among people with ASD and by the shortage of existing tools that currently support people with ASD to market their skills to potential employers. This ‘gateway to employment’ platform will provide tools to individualize employment readiness that can lead to concrete deliverables (e.g., customized resume, mentor connection) that would be helpful in beginning or continuing their vocational/employment search.   

“This end user-developed online portal may have far-reaching implications for helping people with ASD become better equipped to enter the workforce. Meaningful employment not only benefits end users but may have positive societal benefits to the broader community.”
— Ready 2 Work Team

The CHILD-BRIGHT KT team, including the members of the KT Advisory Committee, will also conduct a case study about innovation in knowledge translation and propose an appropriate evaluation framework for the Making Sense of Connectedness and Ready 2 Work teams.

Congratulations to both winning teams for these highly innovative projects!

We would also like to thank all the applicants of our second CHILD-BRIGHT KT Innovation Incubator grant competition as well as our review panel, which was composed of parents, researchers, clinicians, educators, trainees, and youth with expertise in KT research, childhood disability research, occupational therapy, mental health services, communications, and advocacy.

Meet Carrie Costello, CHILD-BRIGHT's New Parent Mentor

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Hello, my name is Carrie and I am honoured to be joining the CHILD-BRIGHT Network team as its new Parent Mentor. 

I have three beautiful daughters, ages four, seven and eleven years old.  My middle daughter loves music and hugs.  She also has global developmental delays and a seizure disorder with Todd’s paresis.   My work with her every day is both challenging and infinitely rewarding. I am grateful to have this new position to support the amazing work that CHILD-BRIGHT is doing for children with brain-based developmental disabilities.  The network’s different research projects span such a wide range of ages and stages—this excites me as this research will benefit and impact the future of our children. 

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I have both work and volunteer experience as a parent adviser. I sit on CHILD-BRIGHT’s BRIGHT Coaching Parent Advisory Committee, am the Chair of the Rehabilitation Centre for Children’s Parent Advisory Committee, have experience facilitating parent networking and information sessions, and have also served as a panelist at the Children’s Hospital Research Institute of Manitoba (CHRIM) Child Health Days, contributing to discussions on how academics doing research in university settings are assessed.  

I also work as both a playwright and puppeteer in theatre for young audiences. I love this work and have used many of my dramatic skills in my work with my daughter with a developmental delay. I have also incorporated many of the strategies I have learned working with therapists and my daughter into my work as a puppeteer and playwright. 

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I will be transferring many of these skills to my new Parent Mentor position: listening carefully, re-telling a story and getting to know my audience. My goal is to help parent-partners be successful in their roles by keeping track of their needs, letting them know what resources are available to help them, and sharing strategies that have been shown to be successful. I will also be their link to the CHILD-BRIGHT Citizen Engagement Council, and will represent their interests on CHILD-BRIGHT’s Training Committee.

If you have questions, concerns or would like to share a story, please contact me at parent.mentor@child-bright.ca. I look forward to getting to know you!

 

Still Transitioning...

This testimonial was originally published in the National Hospice and Palliative Care Organization’s ChiPPS pediatric e-journal #54

By JoAnne Mosel, CHILD-BRIGHT Patient-Partner, and Richard’s mom

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The transition of a child with a brain-based developmental disability from the pediatric to the adult care system is an issue of large concern today in Canada, and many parents like myself, who have been through this step, continue to face challenges despite our child now being an adult.

My name is JoAnne and my son Richard is now 31 years old. He has a rare disorder called Duplication 15q (Isodicentric 15q) Syndrome which manifests in autistic traits, sleep disorder, pervasive developmental disorder (PDD) and epilepsy, among others.

The Start of Transition

When my son entered his teens, I began to grow more aware that we would need to prepare for his adult years. School had been our main service provider and we knew he would soon age out. The school took over responsibility for many therapies that he needed such as speech therapy, occupational therapy and physical therapy. During his teens, he even received applied behavioural analysis therapy, which is usually reserved for children under the age of 5 with autism. This was provided on a one-on-one basis and his therapist was an excellent match for his personality. He made good progress, from which he benefits still to this day.

But other services and professionals were growing more elusive.

His neurology team had taken a back seat since an EEG revealed atypical spikes but no clear reason to medicate him or follow up regularly.

His pediatrician only saw him for emergencies such as earaches or other such issues.

And although behavioural specialists and psychiatrists were still in the picture, as the years went by, therapists fell to the wayside. It became more and more difficult to access services. Budgets were being cut and getting an appointment with a social worker or coordinator took months.

Where to Start?

As I prepared for his transition, I wondered where to turn. Was transition a subject to be broached with the education system or the social services system? In our case, we wanted to pursue two options in particular: access to a rehabilitation day centre or a specialized education adult centre. When he was about 14 or 15 years old, I began to ask questions about these options and was told we’d have to wait.

In our case the age of 18 would be pivotal for the medical side whereas 21 would be the age-out for educational purposes.

At the age of 21, he started going to a rehabilitation centre where he was doing productive activities, but over time, these were abolished. And contrary to the name, no rehabilitation services were included.

Transition Happens Everywhere

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One thing I learned by watching Richard grow from a teenager to an adult is that transition is about more than medical care and services… it’s about supporting the entire child. In 2012, Dr. Peter Rosenbaum and Dr. Jan Willem Gorter, Co-Founder and Director of CanChild respectively, published a paper titled “The F-words’ in Childhood Disability” that introduced 6 words that the authors believed should be the focus of childhood disability: Function, Family, Fitness, Fun, Friends, and Future. These resonated with me, and I’d like to share the impact of transition on these 6 crucial fronts for Richard:

FUN – My son used to enjoy going to concerts and shows. Music is his one great love and when he was young, going to children’s shows was fun, inexpensive and very doable despite always struggling with crowded open spaces. The noise, movement and unpredictability caused him distress and affected his behaviour.

As he grew older, kids’ shows were no longer an appropriate venue and he became more and more difficult to manage in public due to his growing strength and the impact of his seizures and medication (effective or otherwise).

Music class seemed like a good option and we found one geared to individuals with disabilities, but he was asked to withdraw after 3 weeks. They judged him to be too able. Most of the participants were in wheelchairs and they said he was too mobile and disturbed them.

We tried other activities but as he grew older, those also became problematic. He couldn’t keep up in Boy Scouts; his skiing instructor found him too big and heavy to pick up or guide down the hill, etc.

He was losing access to the activities he most enjoyed.

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FITNESS – While my son was in school, he had access to the school gym. This gave him an outlet for his pent-up energy and he enjoyed shooting baskets. The gym also had climbing equipment, bean bags to throw, and the staff ran exercises to promote hand-eye coordination.

Once out of school, the burden was on me and my family to find activities that would keep him strong and healthy. Most organized activities offered by the community became competitive, and these did not suit him. During his teens, he participated in track and field in the Special Olympics but after a few years of this, it became less and less worth going. There was too much waiting in line for him. The large environment was overwhelming with its high ceilings and echoes. His sensitivity to noise also resulted in worse behaviour rather than better.

He now goes to the pool at our local Y to swim.

FAMILY – As my son grew older and stronger, his behaviour became more unpredictable making family get-togethers with my small extended family more difficult. He started to exhibit more signs of aggression and violence. He had difficulty tolerating the noise and couldn’t handle many people speaking at the same time. He made his displeasure known. His siblings tolerated his breaking their belongings but made sure to let him know, in no uncertain terms, they were not happy. Richard also increasingly wanted their attention; wanting to sing together, read together, go for walks.

His younger siblings did their best to dedicate this time to him—they would sing and read to him—but as siblings do, they also often picked on each other.

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FRIENDS – Like many kids with his type of disabilities, my son’s friends are few and far between. While he was integrated in a regular school and class (with an aide), a few children took an interest in him. They would volunteer to help, say, bring him to the school gym or to another activity. They would throw around a ball with him in the schoolyard.

But once out of an integrated setting, there were no friends to speak of. He lacks the independence or skills needed to be in groups of verbal individuals, or to participate in their activities. His interests lie in one-on-one socializing. Back and forth verbal interaction is not possible in groups of non-verbal individuals with whom he is placed.

FUNCTION – In transition, much emphasis is placed on developing activities of daily living. For some reason, academic skills are left behind. I don’t understand why this is so often the case. I believe it is a misunderstanding and dogma surrounding the ability to learn once one is outside of school age.

Collecting bottles and returning them in the bottle return machine at the grocery store is an activity that has taught him concepts more concretely than a classroom setting could provide. The voucher emitted from the machine meant it was time to go shopping and he could purchase what he wanted. This was a critical milestone. It meant gaining a bit of control over his life.

Like most of us, he went through a period of having a strong need for control over his life. I feel this need cannot be overstated. It occurs perhaps at a time when even more control is being exerted by outside forces. Parents, teachers, time schedules... all infringing on his need to want to sleep in, eat when he felt like eating, do what he wanted to do. When trying to structure his time became too exhausting, we’d let him go on YouTube to watch videos. He was initially unable to navigate using a mouse, but quickly became extremely adept at it. I noticed, after watching what he was doing for a while, that he was capable of much more than I’d realized.

Which leads me to the final word: FUTURE

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At this point, there is no plan in place; we are still searching for ways to best support Richard as a now 31-year-old adult. There are no interesting goals laid out, only vague words such as ‘increasing independence’ or ‘functional skills’. But as long as he is medically stable (seizures under control, side effects of the meds minimized, etc.) I’m hoping he will be offered many learning opportunities, socially, functionally and academically.

On my end, I am doing what I can to help improve the system for children like him in the future. I am now a patient-partner on a research project called READYorNot, funded by the CHILD-BRIGHT Network and co-led by Dr. Gorter (one of the authors of the F-Word article that I referenced above) as well as Dr. Ariane Marelli and Dr. Khush Amaria. In this project, we are developing and evaluating e-health aids to help patients and families take charge of this transition. The project is supported by Canada’s Strategy for Patient-Oriented Research (SPOR) initiative, which endorses the active partnership of patients, researchers, health professionals and decision-makers in research to build a sustainable and accessible health care system that optimizes the health of all Canadian citizens, including my son. By sharing my story here, and my experience within the READYorNot team, I hope to help make the lives of children like my son better in the future.

 

Metformin in CP Team Forms Stakeholder Engagement Committee

The Metformin in CP team is pleased to announce the creation of its Stakeholder Engagement Committee (SEC). The SEC was formed to provide a platform for collaboration, input, and guidance from various stakeholders specific to the CHILD-BRIGHT Metformin in CP research study.

The first SEC meeting was held at Holland Bloorview Kids Rehabilitation Hospital on February 7, 2019. The committee consists of 5 stakeholders with a wide range of lived experience in the cerebral palsy community, including three individuals diagnosed with cerebral palsy and two parents of children diagnosed with cerebral palsy.

The SEC members bring insights from previous involvement with cerebral palsy research including participation in pediatric research and research advisory committees, securing funding for basic and clinical cerebral palsy research, as well as years of experience in health journalism and research. One of our members, Jessica Geboers, had the following to say:

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“I am a journalist currently working as a communications officer at the University of Guelph-Humber in Toronto. As someone who has a moderate form of Spastic Diplegic Cerebral Palsy (CP), I am an active member of the disabled community and often use my journalism to advocate for and further the understanding of what it is like to live with a disability. When Dr. Darcy Fehlings invited me to join the Metformin for CP trial Stakeholder Engagement Committee, I was all too happy to accept and bring my experience to the table. I, like all of us, am excited by the possibilities that Metformin may hold for children and youth with CP, both now and in the future. There’s no magic pill to cure the challenges of CP, but every little bit helps as they grow and work towards their best lives.”

The inaugural meeting included all 5 stakeholders and the research teams from Holland Bloorview and The Hospital for Sick Children, and served as an opportunity to familiarize the members with the study design, aims and objectives. The committee members were already able to provide meaningful input that has since been integrated into the study design including how we can better communicate eligibility criteria to families to ensure their understanding as well as expanding on how the study pills can be administered (i.e. crushed via gastrostomy tube). The productive discussion began what we hope will be a fruitful collaboration between the research team, stakeholders, and the greater cerebral palsy community.

Learn more about the Metformin in CP project in our Report to Community.

Strengthening our Connections at the 2018 CHILD-BRIGHT Annual Meeting

At CHILD-BRIGHT, we always look forward to in-person gatherings. As a pan-Canadian network, with members living across our very wide country, this is never easy, which is why we were especially thrilled to welcome 117 network members, including 20 patient-partners, at our 2018 CHILD-BRIGHT Annual Meeting in Montreal from December 5 to 7.

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Members of all our program and project teams, including patient-partners, research team leads, committee members, and central office staff came together to discuss our shared mandate, explore topics of interest related to patient-oriented research, and brainstorm ways to strengthen our connections among projects, programs, teams, and sites!

Programming Overview

Nancy Mason MacLellan, Manager of Major Initiatives at the Canadian Institutes of Health Research (CIHR), offered opening remarks alongside CHILD-BRIGHT Principal Investigator Lucy Lach and Citizen Engagement Director Frank Gavin. Each network research project team then presented updates about their work during our Meet the Investigators session. A series of sessions followed, tackling a wide variety of topics including recruitment, stakeholder engagement, equity in research, and sustainability. Consult our full event program here.

Networking & Learning From Each Other

A poster session took place on Day 1 and helped attendees and teams exchange ideas about ongoing work. A total of 22 posters were on display. Cross talks occurred on several topics of mutual strategic interest such as how to meaningfully involve patient-partners in the research work, and how to incorporate sex and gender into the projects. Read our full poster abstract booklet here.

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A BRIGHT Board & Networking Corner helped promote a collaborative atmosphere throughout the entire duration of the meeting. Attendees could post advice on this dedicated wall, share their thoughts, contribute comments, or ask questions. The networking section of the board also allowed members to not only share their direct contact information with other attendees, but also ‘pitch’ ways in which they could positively contribute to the work of other teams in attendance or solicit help to address some of their current team challenges.  

Policy Forum

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On December 7, policy makers from across Canada led discussions and engaged our multi-stakeholder group in a session that provided the audience with an overview of how policy is formulated and explored the gaps that exist between the worlds of research and policy. Three illustrative case studies underscored a number of key factors that should be accounted for when advocating for policy change. It is intended that these preliminary discussions set the stage moving forward as CHILD-BRIGHT mobilizes knowledge to action to help address issues related to the care of children and youth with neurodevelopmental disabilities.

Advancing our Patient-Oriented Work

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Committees and groups also convened, including parents of children with brain-based disabilities who met for a lunch to exchange their experiences with one another and share their insight with our Citizen Engagement Director, Frank Gavin, on how their involvement in the network could best advance and inform our patient-oriented work. Patients also helped steer the format of the meeting and its publications, including reshaping the way meeting speakers and participants were introduced in our programs; each contributed written personal testimonials and impact statements instead of traditional biographies, an approach that was proposed by a network patient-partner to better help highlight the expertise that lived experiences also bring. Download these here and let us know what you think of this alternate approach! 

Leveraging the Expertise of our Funders and Network Members

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We also had the honour of hosting some of our network funding partners including our Platinum funding partners from the Montreal Children’s Foundation & Opération Enfant Soleil, who graciously hosted a roundtable discussion titled How to keep donors and foundations engaged in research. Using a roundtable discussion format, meeting attendees also brainstormed ways to engage different populations in research including newcomers to Canada whose first language is not English, Indigenous People, parents living with income insecurity, and youth who use communication devices.

By coming together, we learned from each other and created new partnerships and collaborations, proving that a network can truly be greater than the sum of all its individual parts.

(Photo credit: Julian Haber)

Thank you to all our event attendees, many of whom traveled a great way to join us. We also wish to sincerely thank our network funding partners, without whom our work would not be possible.

Announcing the 2018 CHILD-BRIGHT Training Innovation Fund Winners

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We are pleased to announce the winners of the 2018 CHILD-BRIGHT Training Innovation Fund (TIF) competition, an initiative to facilitate the development of innovative training activities that will foster patient-oriented research training and mentoring within research projects focused on childhood brain-based developmental disabilities.

We received a number of strong proposals and following an in-depth review, the evaluation committee recommended two proposals for funding based on the impact that their proposed deliverables would have on increasing capacity for patient-oriented research within the CHILD-BRIGHT Network and beyond.

We congratulate the two following successful TIF winners:

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Project:

Learning Together: the use of simulation to enhance and enable authentic and meaningful research partnerships

Kathryn Parker

Kathryn Parker

Leads:
Kathryn Parker, Senior Director, Academic Affairs and Simulation Lead, Holland Bloorview & Nadia Tanel, Manager, Research Operations, Holland Bloorview

Funding amount granted
:
$9,979

Project timeline:
Jan-Dec 2019

Nadia Tanel

Nadia Tanel

Project summary:
The proposed project aims to develop a suite of five simulation-based learning modules designed for multi-stakeholder research teams that include patients/families as partners. Adopting a co-learning approach, these modules will be designed to address complex challenges experienced by patients and scientists while engaging in patient-oriented research.

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Project
:

Development of a partnership model for collaborative research with youth with disabilities

Gail Teachman

Gail Teachman

Lead:
Gail Teachman, Assistant Professor, Western University

Funding amount granted:
$10,000

Project timeline:
Jan 2019-Jan 2021

Project summary:
The project aims to pilot a model for meaningfully engaging youth with diverse disabilities as collaborators in an integrated knowledge translation (iKT) research project. This project will actively engage youth collaborators as well as other stakeholder groups in the creation of training modules that train health care providers to approach childhood disability as an interaction between physiological and social determinants of disability.

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Congratulations!

Introducing the CHILD-BRIGHT National Youth Advisory Panel

It has always been our intention to put youth at the center of our work, and we are thrilled to announce that this structure is now in place at CHILD-BRIGHT!  

Dolly Menna-Dack

Dolly Menna-Dack

Last year, we formed a Youth Engagement Steering Committee and mandated this committee to help us establish our youth panel as well as its mandate, terms, priorities, and membership.

Dolly Menna-Dack, Clinical Bioethicist & Youth Engagement Strategy Lead at Holland Bloorview Kids Rehabilitation Hospital chaired this committee. This steering committee also included representatives from multiple provinces, members with lived experience in brain-based developmental disabilities, and experts in the field of paediatric engagement, ethics, and science.

“It has been a pleasure for me to lead this exciting initiative, and today, I’m happy to help introduce this new panel, which will be called the CHILD-BRIGHT National Youth Advisory Panel (NYAP),” says Dolly Menna-Dack.

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“CHILD-BRIGHT is committed to the ideals of patient-oriented research, firmly believing that research designed, conducted, reviewed, and disseminated alongside patient-partners will increase the impact of that research. CHILD-BRIGHT has also, in numerous ways, demonstrated its commitment to patient partnership. For example, it is guided by its Citizen Engagement Council, and recently put in place a Parent Mentor. These innovative ideas have allowed for pan-Canadian involvement of families, scientists, and adults living with brain-based developmental disabilities to come together and contribute to the CHILD-BRIGHT Network,” adds Dolly Menna-Dack.
 
The NYAP will further support CHILD-BRIGHT by providing the youth lived experience lens to the work being done by the network. Meeting on a regular basis, youth advisors with brain-based developmental disabilities from across the country will review research protocols, recruitment strategies, communication plans, and dissemination activities.

And without much ado, please click below to meet each of our new National Youth Advisory Panel (NYAP) members, and click here to read about their first in-person gathering and training session!

MATHIAS

MAYA

MIKE

HANS

LOGAN

 

Our First National Youth Advisory Panel Gathering

This past summer, on June 23 and 24, 2018, Mathias Castaldo, Maya Pajevic, Hans Dupuis, and Logan Wong, four members of our new National Youth Advisory Panel (NYAP) traveled from Montreal, Toronto, and Calgary to attend their first training event together in Toronto. 

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This inaugural training session was a combined effort by CHILD-BRIGHT and Holland Bloorview Kids Rehabilitation Hospital, put in place to help introduce the new youth panel members to their new roles within our patient-oriented research network, in which their voices as youth with lived experience with brain-based developmental disabilities will be key!

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The session was hosted by Dolly Menna-Dack, Chair of CHILD-BRIGHT’s Youth Engagement Steering Committee, and was held at Holland Bloorview, where Dolly is the lead for the hospital’s Youth Engagement Strategy. 

Day 1 began with a welcome breakfast, introductions, and icebreakers and then quickly launched into the rest of the day – there was lots of learning to do! Over the course of several hours, our youth members learned about key themes in research such as communication methods, core concepts in ethics, and common issues in pediatric ethics. The day ended at Holland Bloorview’s Youth Advisory Council’s end-of-year party.

Day 2 focussed on CHILD-BRIGHT's Introduction to health research training module, followed by a tour of Holland Bloorview. Frank Gavin, the Chair of the Citizen Engagement Council at CHILD-BRIGHT joined the group at lunch. After that, the youth participated in an education session on reviewing research, as well as a workshop on understanding implicit biases and why these are important to keep in mind as advisors.

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“It was an action-packed couple of days in Toronto, but it proved to be quite an inaugural event for the NYAP! Not only was the panel given a valuable introduction to their new roles and to the world of research, but it was also a wonderful opportunity to come together as members of the CHILD-BRIGHT community,” says Dolly Menna-Dack.

“It was great to put names to faces of the other members of the network, and also to get introduced in a very positive way to the realm of research, what research looks like, what research is, and what our role as members of the CHILD-BRIGHT Network will be to improve the lives and experience of those living with a brain-based disability,” says NYAP member Maya Pajevic.  

Thank you to Dolly Menna-Dack and her team at Holland Bloorview, and also to the wonderful members of both the CHILD-BRIGHT and Holland Bloorview youth committees for such a successful event!

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Meet Hans Dupuis, National Youth Advisory Panel Member

We are thrilled to introduce the members of our new National Youth Advisory Panel. To read more about this new panel, and its mandate, click here.

Hans Dupuis, 23

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What are you studying and/or what are your professional ambitions?

I completed high school in 2011 and went to CEGEP until 2016, but didn’t complete it. I’ve had several small jobs but my goal was to get a job as an librarian’s assistant in a local Montreal library. I signed up to Action Main-d’œuvre, an organisation that helps people ‘with differences’ find employment and with their help, I got a position at Air Canada. I’ve been working there since 2017.

I’ve also been a mentor at Action Main-d’œuvre Worktopia workshops, a program that helps people with autism get ready for the workforce.

 

What are your passions, interests, and hobbies?

In my free time, I read a lot of manga and graphic novels. I also play video games on the computer with a friend. I like playing Dungeon and Dragon with a group of friends, and also enjoy live-action role playing (LARP). I enjoy going to the movies with my girlfriend. I like doing Cosplay at conventions. I also take medieval fencing lessons and have done Kendo in the past, a type of Japanese fencing.

I love history and because I studied it in school, I’m quite knowledgeable in this field. I have a very good memory.

I also love learning foreign language; I studied Spanish and German in CEGEP, and am learning some Russian at home. I strive to one day add Japanese to this listing since Japan fascinates me. I dream of going there one day!

 

Can you tell us about your experience with brain-based developmental disabilities?

I have pervasive developmental disorder (mild Asperger syndrome), now called Autism Spectrum Disorder, with a mild attention deficit. During my school years, I’ve always received help, from grade school to CEGEP.

 

What are your hopes for the National Youth Advisory Panel?

I don’t have specific ambitions but I want to help others with brain-based disabilities or autism, in any way I can, and hope to learn from this team along the way also.

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Meet the other youth advisory panel members:

MATHIAS

MAYA

MIKE

LOGAN

Read about our first in-person gathering and training session here.

Meet Logan Wong, National Youth Advisory Panel Member

We are thrilled to introduce the members of our new National Youth Advisory Panel. To read more about this new panel, and its mandate, click here.

 

Logan Wong, 21

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What are you studying and/or what are your professional ambitions?

I’m in my third year of the Bachelor of Social Work at Ryerson University. After graduating, I plan to pursue a Master’s in Social Work.

What are your passions, interests, and hobbies?

I do a lot of volunteering in my community and I’m on various committees to support my passions, and for professional development. I also enjoy sports.

Can you tell us about your experience with brain-based developmental disabilities?

I have cerebral palsy, obsessive-compulsive disorder, and a non-verbal disability.

 

What are your hopes for the National Youth Advisory Panel?

I want to help bring youth voices to conversations about research! By working as a team, we can make research proposals more accessible to the youth population.

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Meet the other youth advisory panel members:

MATHIAS

MAYA

HANS

MIKE

Read about our first in-person gathering and training session here.

Meet Mike Sametz, National Youth Advisory Panel Member

We are thrilled to introduce the members of our new National Youth Advisory Panel. To read more about this new panel, and its mandate, click here.

Mike Sametz

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What are you studying and/or what are your professional ambitions?

I am currently a business student at the University of Calgary with the intention of majoring in accounting.

 

What are your passions, interests, and hobbies?

I am a competitive road and track cyclist on the Para-Cycling National Team. I have raced with the team since 2014. I began cycling at age 12 when I was looking to try a new sport. I started competing in the sport when I was 14. Cycling has made me learn to adapt and overcome my CP weakness because it is sport that requires my affected side to be successful.

My most notable accomplishments since competing internationally in para-cycling include racing at the Rio Paralympics and winning a bronze medal in the Time Trial event. I also won the Time Trial event at the World Championships in 2017.

 

Can you tell us about your experience with brain-based developmental disabilities?

I was born with right hemiplegic cerebral palsy.  I have always had a determination to excel at any activities or challenges I may face and stay competitive with my able-bodied peers. I have learned to be patient and persevere through challenges that are physically demanding or socially awkward (such as handshaking). I strive to be independent and continuously improve on my CP functionality.

 

Why did you want to get involved with CHILD-BRIGHT?

I participated in Dr. Adam Kirton’s PLASTIC CHAMPS study and like to stay connected with what is happening in the community.  I wanted to get involved with CHILD-BRIGHT as it allows me to share my experiences with CP and the challenges I have faced. I hope to help current kids with CP overcome their fears or challenges. Organizations like CHILD-BRIGHT were instrumental in my growth and maturity as a child and adolescent.

 

What are your hopes for the National Youth Advisory Panel?

I was lucky enough to participate in a study that had a profound impact on my self-confidence and identity. My hopes for the NYAP is to ensure research studies that are being put forward will have a positive influence on the patient. The research should also have a focus on improving a patient’s quality of life.

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Meet the other youth advisory panel members:

MATHIAS

MAYA

HANS

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LOGAN

Read about our first in-person gathering and training session here.

Meet Maya Pajevic, National Youth Advisory Panel Member

We are thrilled to introduce the members of our new National Youth Advisory Panel. To read more about this new panel, and its mandate, click here.

Maya Pajevic, 22

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What are you studying and/or what are your professional ambitions?

I recently started my university degree at Mount Royal University in Calgary, Alberta, doing a Bachelor of Arts in Sociology, as well as a double minor in Social Innovation and Innovation and Entrepreneurship.

As well as being a student, I am currently a member of the Design Lab within the Alberta Health Services, helping to ensure the user voice/perspective is present and that health care and the system works for the users—using design-thinking principles! I do this by helping co-facilitate workshops, doing public speaking engagements, and sharing my dream of what health care should look and feel like. I would call myself a rebel—questioning the status quo, wanting exceptional patient experiences, and pushing the health care system to think ‘patient first’ not ‘provider/bureaucracy first’.

My professional and personal interest and goal is that health care doesn’t become structured for every patient, instead that every patient has a health care system that is structured around their needs and wants. And that patients are seen and valued as the most important stakeholder in all health care interactions, and that patient advisors are used more effectively than just a committee-style approach. I also hope that patients don’t accept the system—that they ask ‘why’ and ‘why not’ and always question the status quo.


What are your passions, interests, and hobbies?

Beyond being a student and working, I enjoy traveling. I’ve been to Europe, Brazil and have traveled within Canada, to name a few. I also enjoy photography, especially taking pictures of nature and action shots. I consider myself to be a thrill seeker—doing activities such as skydiving, bungee jumping, and hand gliding. I also enjoy skiing, doing tandem biking with friends and finding the next great coffee shop!! Lattes, dogs and sleep are some of my life essentials!

Can you tell us about your experience with brain-based developmental disabilities?

I was a very happy kid—gifted naturally in sports—hoping and working to represent Canada on the Olympic stage in either skiing or ice hockey. But on August 17, 2002, at the age of six, I was diagnosed with Type 1 diabetes. That night I suffered a massive stroke. When doctors realized what happened, they told my parents not to hope for much. That if I did survive the next 24 hours—which would be a miracle in and of itself—I would be dependent on others for the rest of my life; never walking, talking, communicating, swallowing, chewing, and never functioning in an academic setting. And if that wasn’t enough, doctors also found two more blood clots in my heart that needed imminent attention, so I was airlifted from Calgary to Edmonton and also underwent open heart surgery to remove these potentially fatal clots.    

Now, almost 16 years later, the consequences of my medical scare include:

  • Being conscientious of the foods that I eat

  • Having about 10% sensation on my right side

  • Having no fine motor skills in my right arm

  • Having limited balance

  • Being a bit quiet—I like observing more than speaking

  • Being a bit slower to understand academic material

  • And my social skills are a bit impacted.
     

What are your hopes for the National Youth Advisory Panel?

I hope that the National Youth Advisory Panel can help shift research to become ‘best practice’ and then improve health care for those who need the services.  I also hope that we can show that youth can impact the health care system and can influence the way research is done and carried out—that this model of engaging and involving youth is a benchmark for those wishing to do the same in other sectors.

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Meet the other youth advisory panel members:

MATHIAS

MIKE

HANS

LOGAN

Read about our first in-person gathering and training session here.

Meet Mathias Castaldo, National Youth Advisory Panel Member

We are thrilled to introduce the members of our new National Youth Advisory Panel. To read more about this new panel, and its mandate, click here.

Mathias Castaldo, 23

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What are you studying and/or what are your professional ambitions?

I am a recent graduate of Ryerson University with a BA in Psychology. In September I will be starting a Master of Education in Developmental Psychology and Education at OISE (University of Toronto). I hope to one day be a teacher and perhaps a guidance counsellor, working with students with ‘disabilities’.


What are your passions, interests, and hobbies?

I enjoy hanging out and spending time with friends. I love reading, traveling and running.


Can you tell us about your experience with brain-based developmental disabilities?

I have cerebral palsy. It has made certain things difficult for me such as excelling in sports. 

I also have a learning disability.

However, I have always found the will to adapt and push myself further. Despite all, I have been able to be athletic and excel in school. I don’t allow my cerebral palsy to define who I am.


What are your hopes for the National Youth Advisory Panel?

I am hoping to learn how research will impact target populations. In addition, I am hoping that the panel will be able to comment on how best to improve the research conducted so that it will have a positive impact on the target population.

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Meet the other youth advisory panel members:

MAYA

MIKE

HANS

LOGAN

Read about our first in-person gathering and training session here.

2017-18 Report to Community Now Available

The CHILD-BRIGHT Network Report to Community for the fiscal year ending March 31, 2018 is now available. 

A special thank you to our financial partners for their ongoing contributions and commitment, and to all the patients, families, committee members, and CHILD-BRIGHT supporters who guide us in our work.

Our Report to Community is also available in French

My family’s adventure to the United Nations to share our view on rights-based approaches to disability in Canada

By Susan Cosgrove

When my son Liam was three years old he couldn’t carry a conversation, exist in a crowd without getting overwhelmed, or interact with new people without panic. So much of my time and energy was consumed with accepting the things he could not do that I just couldn’t imagine that we would welcome his 15th birthday together, celebrating the biggest accomplishment of his life.

Attending the Civil Society Forum

Attending the Civil Society Forum

The United Nations Convention of the Rights of Persons with Disability (CRPD) is an international law that protects and promotes the rights of people with disability; made up of global guiding principles to ensure that people with disability can access the same rights and opportunities as their fellow citizens. One hundred and seventy-seven (177) countries have agreed to the convention – and Canada is one of them.

Two weeks ago, the 11th annual Conference of the States Parties to the Convention on the Rights of Persons with Disabilities took place at the United Nations Headquarters in New York City. Attended by both National governments and civil society organizations from around the globe, the goal of the event was to share knowledge about how people with disability are living with their rights in participating countries.

This brings us to my proudest experience as Liam’s mom. Over the past decade Liam has learned how to use his unique skills and interests to become an ambassador for children with disabilities. He has shared his thoughts with doctors, families, health care administrators, donors and policy makers in Toronto. When we were invited to participate together on a panel in New York City discussing rights-based approaches to disability in Canada, we did a happy little dance together.

Liam with Kirsty Duncan, Minister of Science and Minister of Sport and Persons with Disabilities

Liam with Kirsty Duncan, Minister of Science and Minister of Sport and Persons with Disabilities

As a team, Liam and I have a lot of experience to draw on. I have been engaged in research for years as an advisor, co-investigator and spokesperson. I recently began working for the CHILD-BRIGHT Network as their first Parent Mentor. As I begin this role I am focused on learning from the parents involved in the network about how they have engaged in the different projects and programs, and about their hopes for the future of research. I plan to build on these learnings to help connect and inform parents. And it is through this role that I had the opportunity to join the group attending this important landmark event.

Liam has come into his own thanks, in part, to the research world. He began as an enthusiastic participant who loved the activities and personalities of the researchers and health care providers he interacted with. We quickly discovered that he was a skilled ambassador who uses his unique charms to share his thoughts with policy makers and politicians. The opportunity to do so on such a grand scale – at the United Nations – was Liam’s dream come true.

For such a young person, Liam didn’t take the opportunity to influence global leaders lightly. He was there to show them what was possible for a young person when his rights were respected and enforced and to share his hopes for his adult life. He talked about his rights as a Canadian youth with disability and his hopes for the future. He dreams of one day being a mechanic, with a family and a home. He knows that he will require more assistance and support than his non-disabled peers for his entire life. He is willing to put in that extra effort and plans on using his future voting rights to encourage governments to match his efforts with their support. That was his message, that was his voice.

Liam takes Manhattan

Liam takes Manhattan

By being engaged in research in so many capacities over the years, I have learned a lot about the power of lived experiences. It’s as important to bring first-hand perspectives to every aspect of health care and policy development, as it is to bring them to research. Our personal stories keep goals in perspective and remind those in positions of influence why their decisions matter. It’s imperative for both families and professionals to understand the power of engagement. In the past, disability research and policy relied heavily on numbers, trends, reports and data, but lacked the human influence of those living with disability. But now people with disability and their families are becoming an essential part of the team and having direct influence on their own futures. And this is what we felt by being in this global forum. We joined other people with disabilities from all corners of the world: families, youth, adults, side by side with government officials and UN members to share our perspectives and discuss what we think and know is important.

Families may read this and think “Well, I’ve never been invited to the UN and I don’t like public speaking – so this isn’t something I can do.” But influence happens on many levels and from all types of people. It can be as simple as being informed and exercising your right to vote for a government that promotes the well-being of people of all abilities. It could be sharing information with other parents, your child’s school or people in your neighbourhood about the existence of the Convention of the Rights of Persons with Disability (CRPD). In reality, by raising children with disability who are informed of their rights and how to advocate for themselves, we are taking the first steps towards creating a more inclusive future for them.

Rachel Martens’ presentation

Rachel Martens’ presentation

At the UN we were part of a delegation that included scientists and policy makers, Liam and me, another youth delegate and another parent. Rachel Martens is a mom from Alberta who is raising a 12-year-old son with multiple disabilities. She works with the Kids Brain Health Network as a Parent Engagement Facilitator for the online group “Parents Partnering in Research”. In her writing on our experience Rachel asks an important question that relates back to a policy brief compiled by two of our team members: “What if the CRPD was the start to the conversation to ensure that Canadian children living with a disability get the best start in life?" 

Such was a question posed by Dr. Keiko Shikako-Thomas and Dr. Jonathan Lai in the research brief and research presentation they gave during the Canadian event at the UN conference. The event brought together a partnership between two pan-Canadian networks focused on brain-based disabilities: CHILD-BRIGHT Network and the Kids Brain Health Network to facilitate the opportunity to share this research work and more importantly: to bring the voices of parents and youth into this arena. I am thankful for having been provided an opportunity to be a part of the delegation that went to share what we are learning through research on the rights of children with disabilities, and through our everyday lived experiences in Canada. The Canadian event was hosted in partnership with the Government of Canada through the Canadian Minister of Disability and Sports and Science, and I was privileged to be able to share a glimpse into what life is like parenting my son with multiple disabilities and what I felt about his rights as a Canadian citizen.

Our Team (from left to right: Rachel Martens, Nikolas Harris, Kirsty Duncan, Keiko Shikako-Thomas, Susan Cosgrove, Liam Cosgrove, Jonathan Lai)

Our Team (from left to right: Rachel Martens, Nikolas Harris, Kirsty Duncan, Keiko Shikako-Thomas, Susan Cosgrove, Liam Cosgrove, Jonathan Lai)

I was grateful to get to know and work with Rachel. Her son’s challenges are so different from Liam’s, yet we found we shared a sense of sisterhood – an almost automatic understanding of the unique challenges that come with raising special families – no matter how they present. This comes to show the power of connecting with others, sharing experiences, and learning from each other – a lesson I wish to share with other parents in my Parent Mentor role at CHILD-BRIGHT. While we were there, Liam naturally turned to her as another mom figure and sought her out when he felt unsure. This is a tiny example of the power of unity in our special community. I felt comfortable sharing with her the intimate details of Liam’s care and she felt comfortable stepping in as needed. Through our relationships with other families living with disability we create a stronger whole, a louder voice. When parents like Rachel and me have the opportunity to speak for our community, we can feel the power of Canadian families and are humbled to be their representatives. I want to finish with a thank you to those families:

To all those parents – just like me – up at 4am and then spending the day wondering if the school will call, I am so grateful to you for all that you do and your infinite strength. Together we will change our city, our country, and our world!

To learn more about getting involved at CHILD-BRIGHT, visit our Get Involved section.

Collaborating to Find an Accessible and Welcoming Venue for Youth

In preparation for an upcoming meeting where we plan to gather some of our network members, including youth with brain-based developmental disabilities, we recently set out to book a venue. Knowing that we wanted our venue to be accessible, comfortable and work-conducive for all guests, including our younger members, we invited Avi Karp, a 19-year-old student and entrepreneur with personal knowledge about accessibility, to help us evaluate our leading venue.

Corina d’Alesio-Worth (left) & Avi Karp (right)

Corina d’Alesio-Worth (left) & Avi Karp (right)

"I have been living with Multiple Sclerosis (MS) since I was 12 years old and my MS has affected my mobility at times in the past,” says Avi. “When CHILD-BRIGHT asked me to help them select a good venue for others with similar issues, I was excited and honoured. I felt my personal experience would be an asset."

“Avi provided very insightful feedback and observations as we were touring the venue,” says Corina d’Alesio-Worth, from the CHILD-BRIGHT Administrative team. “Some of the tips he shared were:

  • To visualize the space from different perspectives, like imagining we were navigating the room in a wheelchair. Would the space between the tables be too narrow?  

  • To test EVERYTHING: a broken automatic door button could be a big problem for someone using a wheelchair.

  • To pay attention to the user experience. For example, one ‘accessible’ path was very narrow and led us past dumpsters. How would that impact the user experience?

  • Not to overlook smaller details like access to a casual meeting space, to good food, to a strong Wi-Fi signal and to the ports needed to connect a PlayStation. These smaller but great extra touches would help our younger guests be more productive and feel more satisfied with their overall experience at our event.”

“This was my first time being called to help a network in this way, and I think it was a great idea,” says Avi. “It makes much more sense to have someone with a brain-based disability evaluate the venue for an event for others with brain-based disabilities.”

We want to sincerely thank Avi for his time and insight. We have already been in touch with our venue manager to ensure key technical fixes are completed before our meeting, and we are rethinking the path by which our guests will enter the venue to ensure that the user experience is welcoming for all equally. Partnering with Avi was very helpful in guiding our preparations, and we hope that by sharing some of his expert tips, you can also benefit from them (and share them with venue managers too!).