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,” add 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!).

Announcing the winner of our first KT Innovation Incubator grant competition!

We are pleased to announce the winner of the CHILD-BRIGHT KT Innovation Incubator:

Child-Sized KT

The Child-Sized KT project is led by Dr. Shazhan Amed, Stephanie Glegg, Rosa Livingstone, Dr. Ian Pike, Dr. Elodie Portales-Casamar, John Jacob and Dawn Mount. Meet the team here:

What is Child-Sized KT?

The Child-Sized KT team will use the KT Innovation Incubator grant to develop an online platform that will provide opportunities for youth and families to actively participate as partners in research, from developing the question, to designing the study, to sharing new knowledge.

More specifically, the Child-Sized KT team will:

  • Document child and family partner stories about the value of research engagement
  • Gather feedback from children and their families, and assess the usefulness of the stories in motivating child and family research engagement
  • Co-design an online family portal for the Child-Sized KT platform that uses these stories and gaming features (e.g. point scoring, badges, missions, communities) to motivate children and families to learn about health research, why their involvement is important, and how to access research opportunities.
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This portal will be innovative in its use of gamification (i.e. elements of game playing to improve engagement) to motivate children and families to learn about the benefits and logistics of research involvement. The portal will offer an alternative to lengthy written materials, in-person workshops and online learning on patient-oriented research and serve those without previous intention to engage in research.

The CHILD-BRIGHT KT team, including the expertise of the KT Advisory Committee, will also conduct a case study about innovation in knowledge translation and propose an appropriate evaluation framework for the Child-Sized KT team.

Child-Sized KT will transform the way we engage children, youth, and their caregivers in the research, making our research at BC Children’s Hospital and Sunny Hill more responsive, relevant and meaningful to the patients we serve. We are thrilled to receive this support from CHILD-BRIGHT which will galvanize our efforts in creating a fun, engaging, and easily accessible platform for patients and families.
— Dr. Shazhan Amed

The Child-Sized KT team was established two years ago as a collaboration of researchers and clinician-scientists at BC Children’s Hospital (BCCH) interested in advancing knowledge translation (KT) in pediatrics. All aspects of Child-Sized KT up until now have occurred in partnerships with children and families, researchers and health professionals, so that it truly meets the needs of its end-users. Through their family partner (Rosa Livingstone) and co-PI (Stephanie Glegg), they are focused on engaging children with brain-based disabilities and their families, giving them an opportunity to inform the development of Child-Sized KT.

Congratulations to the Child-Sized KT team, and we would like to thank all of our applicants to our very first 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, who had the difficult task of selecting only one winning project out of the 15 submissions.

CHILD-BRIGHT Principal Investigator Featured on CTV W5

Watch CTV W5 & meet Dr. Jan Gorter, Director of CanChild & Principal Investigator of CHILD-BRIGHT's 'READYorNot' Moving Ahead with Transition of Care from Adolescence to Adulthood project & learn why his work trying to address the gap in transition from paediatric to adult care for children with disabilities in so important in Canada.

The families of severely disabled children dedicate their lives to nurture and protect them, but what happens when the funding and services they rely on are cut off? W5's Sandie Rinaldo investigates the uncertain future faced by disabled children when they become adults.

Supporting families of preschoolers with suspected developmental delays

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March 12-18 is Brain Awareness Week, and here at CHILD-BRIGHT, we are taking this opportunity to highlight the important work being done in our network to better support families of children with brain-based developmental disabilities. One such example is our collaboration with the Children’s Hospital Research Institute of Manitoba on the BRIGHT Coaching study where together, we aim to help better support families of preschoolers with suspected developmental delays.

Children develop important skills during the preschool years, however some children have difficulties or delays in developing these skills. For families with children experiencing delays, an assessment by a developmental specialist can be an important part of their journey. This can take time and the process of assessment, diagnosis, and accessing care and services can be stressful for families.

The BRIGHT Coaching study is developing a coaching program to help families of young kids with suspected developmental delays during their preschool years. The coach intervention will offer a comprehensive set of tools to support and help empower families. These tools will include:

 
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A coach will help parents as they wait for assessment, by talking them through different challenges as they arise.

 
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Online education tools will complement coaching sessions, covering topics on child development, service providers, family support, and community resources.

 
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Parents will be able to connect with other parents and families in similar situations, and share questions, experiences, advice, and more.

The study will take place at four different sites and four different cities across Canada: Montreal, Vancouver, Halifax, and Winnipeg. The BRIGHT Coaching research team is led by Dr. Annette Majnemer (McGill University Health Centre Research Institute) in Montreal, and co-led by Dr. Maureen O'Donnell (Child Health BC) in Vancouver. The team is made up of clinicians, researchers and parents, with team members spread out across the country.

Dr. Kristy Wittmeier, Dr. Ana Hanlon-Dearman and Dr. Gina Rempel are researchers at the Children’s Hospital Research Institute of Manitoba and they share the role of lead investigators for the Manitoba CHILD-BRIGHT Site. “We are excited to be a part of this national network, and to make sure that the opportunity to be involved in this trial is open to parents in Manitoba” says Dr. Wittmeier.  “We are pleased that parents have had, and continue to have an important role in developing the coaching intervention. Waiting for assessment and diagnosis can be a stressful time for families and we hope to learn more about what is most effective in helping support parents during this time.”

The BRIGHT Coaching team partners with an incredible group of 10 Canadian parent advisors, who provide essential insight, guidance, and feedback about how to make all aspects of the study relevant and helpful for parents. For example, last spring, an online parent survey was launched to gather feedback from 250 Canadian families, to help develop the best content for the program.

“The BRIGHT Coaching team members at the Children’s Hospital Research Institute of Manitoba have been an incredible asset to the study, partnering with parent advisors, researchers and stakeholders at the local and national level to develop a coaching program that has impact for Canadian parents,” says Dr. Annette Majnemer, BRIGHT Coaching Principal Investigator and CHILD-BRIGHT Nominated Principal Investigator and Scientific Director.

 Dr. Annette Majnemer

Dr. Annette Majnemer

 Dr. Maureen O'Donnell

Dr. Maureen O'Donnell

 Dr. Kristy Wittmeier

Dr. Kristy Wittmeier

The study pilot is anticipated to launch this spring and the official study will be launched in the summer. You can learn more about CHILD-BRIGHT and the BRIGHT Coaching study here.

If you are – or know of – a parent interested in the BRIGHT Coaching study, please share this article and have them reach out via email to Manitoba Site Coordinator, Shayna at spierce@rccinc.ca.

“I feel a sense of excitement at the end of the teleconference meetings because I feel I’m part of something that could truly make a change, make a difference. That momentum stays with me and fuels me to dive back into the daily ritual of therapy and appointments and schedules that support my son”
— Sasa Drover, Mother of 4-year-old boy with ASD and VACTRYL association disease

Share your experiences and thoughts with us on social media by tagging @ChildBrightNet and @CHRIManitoba and using the hashtags #BrainAwarenessWeek and #BrightCoaching.

Meet Susan Cosgrove, CHILD-BRIGHT's First Parent Mentor

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Hi everyone! My name is Susan Cosgrove and I am very happy to begin my role as CHILD-BRIGHT’s first Parent Mentor. I live in Toronto with my 3 children who all have brain-based developmental disorders. We are a family of advocates who are active in the Toronto childhood disability community. We live our lives in the spirit of neurodiversity.

I have been involved in research as a family advisor and in other roles for the past five years. I am passionate about Knowledge Translation, specifically how knowledge can be placed into the hands of families to empower them to share their own expert knowledge about their children. By developing and putting into practice new ways families, researchers and clinicians can collaborate, we are all helping to make patient and family centred care both a norm and an expectation.

In my role as a Parent Mentor I look forward to collaborating with and connecting parents from all over Canada. I am excited to learn from parents about what life with disability is like in their province and how they see their involvement in research shaping the future.

Using my experience in research I hope to support parents in sharing their stories and expertise in a way that makes full use of their unique talents and experiences.

Having such a unique family gives me a bounty of experiences, struggles, accomplishments and resources to draw upon. Whether it be taking my oldest son on his first ever plane ride to see the Franklin D Roosevelt (his hero!) Memorial in Washington DC or navigating the school system to find my little one the right school to embrace his potential, every day is an adventure.

I believe the research community is on an exhilarating path where researchers and families are true partners, and I am excited to be a part of it.

CHILD-BRIGHT Researchers Featured in CIHR's Canada 150 Ranking

Congratulations to Drs Annette Majnemer, Steven Miller, Prakesh Shah and Wendy Ungar, four leading CHILD-BRIGHT researchers, for being featured in the CIHR Celebrates Canada 150 compilation. This compilation highlights health researchers and partners in Canada who are changing lives and making an impact for (and with!) patients nationwide. Read more about their work below.

Congratulations to all other researchers and teams profiled in this wonderful compilation. The future of Canadian research is bright!

Annette Majnemer
CHILD-BRIGHT Director and Principal Investigator

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Steven Miller
CHILD-BRIGHT Co-Director & Principal Investigator

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Prakesh Shah
CHILD-BRIGHT Principal Investigator

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Wendy Ungar
Co-Lead, CHILD-BRIGHT Health Economics

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A Successful First National Gathering: Brain-Child-Partners Conference 2017

From November 6 to 8, 2017, researchers, youth, family members, health professionals, educators, policy makers, and all interested in partnering to advance research in brain-based developmental disabilities gathered in Toronto for our first national conference, the Brain-Child-Partners Conference 2017

Co-hosted with Kids Brain Health Network, the Brain-Child-Partners Conference brought together 302 people touched by childhood neurological disabilities and, under the theme of ‘Reciprocity’, we listened, collaborated and exchanged, with the goal of positively impacting each other’s work.

An Active Exchange of Ideas

The event programming was designed to encourage an open and reciprocal exchange of ideas, and we were thrilled to see this unfold! Active dialogue took place on topics such as advances in brain research, mental health, helping families navigate transitions, patient engagement, effective communication channels, the cooperation between basic and applied research, and so much more. View the full event programming here. Thank you to all speakers and participants for this lively and productive exchange of ideas!

Up-and-Coming Researchers

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Young researchers and trainees presented their work, met and exchanged with experts in their fields, and took part in a poster competition. Congratulations to the Trainee Poster Award recipients: 

Theme 1: Disease Modeling and Etiology
Awarded to: Jelena Popic, PhD
Postdoctoral Fellow - McGill University
"Metformin rescues impaired behaviors, dendritic morphology and downregulates ERL signaling in Fragile X Syndrome mouse model"

Theme 2: Diagnostic and Screening Tools
Awarded to: Zach Boychuck, MSc (OT) 
Doctoral Student - McGill University
"Partnering with parents & primary care providers: Using consensus methods to determine the early signs that should PROMPT referral for diagnosis of cerebral palsy"

This is the start of something new. Where our voices matter.
— Symon Hay, Patient Representative

Theme 3: Interventions
Awarded to: Alicia Hilderley, MSc
Doctoral Student - University of Toronto
"Changes in sensorimotor functional connectivity following gross motor training for children with diplegic cerebral palsy"

Theme 4: Social - Community
Awarded to: John Aspler, BSc
Doctoral Student - Institut de recherches cliniques de Montréal
"What we say matters: Stakeholder perspectives on media coverage and public understanding of fetal alcohol spectrum disorder"

Theme 5: Partnership
Awarded to: Julia Hanes, BSc
Research Assistant - McMaster/CanChild
"Engaging Youth and Researchers: A collaborative video project to spread awareness on the #F-words"

National Visibility & Engagement

An active dialogue also took place outside of the meeting rooms, on social media and in post-conference publications. Read a few here:

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See what people had to say on social media about our conference

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It's time for Canada to measure up on kids with disabilities
(Toronto Star, November 12, 2017)

by Stephanie Dunn and Jennifer Zwicker

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Some of my takeaways from the Brain-Child-Partners Conference 2017

by Jessica Geboers

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Shut Up and Listen

by Sue Robins

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Reflections on our theme of reciprocity

by Kids Brain Health Network

 

We wish to thank all attendees for their active participation and involvement in our network. Because of you, our first national gathering was a resounding success!

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Meet 2017 Summer Studentship Recipient: Simon Robins

CHILD-BRIGHT is proud to offer opportunities to help involve future generations of researchers, health professionals and leaders in patient-oriented work in Canada.  Meet Simon Robins, one of our 2017 Summer Studentship recipients, and read his reflections on his time at CHILD-BRIGHT.   

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Name: Simon Robins
Studying: Master of Library and Information Studies, UBC
Focus of summer internship:
CHILD-BRIGHT Optimizing the Management of Pain and Irritability project

 

"Through the CHILD-BRIGHT summer studentship program, I’ve been able to assist my research team in developing an outreach strategy which ensures successful knowledge translation of our research process and outcomes to a broader audience through a new website. The research project being communicated is titled “Optimizing the Management of Pain and Irritability in Children with Severe Neurological Impairments,” and is led by Dr. Hal Siden. This study evaluates the assessment and management of pain and irritability in children with neurological impairment. This is a randomized, multi-site trial of a clinical pathway to focus and streamline the evaluation and assessment of this population.

I made sure to keep in mind the importance of creating a website which is oriented towards patients and their families and is easily understood by non-academics.

To effectively translate this online knowledge and revise existing content on Dr. Siden’s past projects, I relied heavily on the patient-oriented research articles and the webinar discussions from the summer studentship program. Above all, I made sure to keep in mind the importance of creating a website which is orientated towards patients and their families and is easily understood by non-academics. I primarily achieved this by implementing a user-friendly design and by testing our content on our Family Advisory Committee (upcoming).

For the bulk of my project, I re-designed and drafted new content for PedPalASCNET's website using WordPress. To begin, I reviewed existing content from other lab websites, and drafted content based on trends I found. I then planned interviews to gather families’ stories on their experiences participating in our research, and to test the early designs and content to make sure that they are usable and understandable. Focus groups have been scheduled to gather similar feedback from families.

In addition, I managed PedPalASCNET’s social media/mailing lists. This work with social media directly informed our ongoing outreach strategy by allowing me to analyze our twitter data, our website usage through Google Analytics, and the analytics on our MailChimp emails. We made an effort to find twitter users who identified as families of sick children and track which tweets were popular. As a result, the research network now has a better sense of what the research and patient communities engage with the most, and we have tailored our web content according to these trends.

I will continue to involve patients and caregivers when designing the information resources which are meant to serve them and their health providers.

As a library and information studies student I am highly interested in outreach and scholarly communications within academic libraries and research networks, and I feel I have gained greater exposure to this type of work by helping to redesign the website and conduct outreach through social media and patient interviews. Through weekly tweets and retweets about current event articles and the latest academic research, I feel more confident about my ability to generate engagement and attract new followers within the research, patient, and caregiver communities. I also feel more confident about my ability to translate knowledge within websites by employing user-centred design and by framing complicated research topics into language that is easier to understand. This above all depends upon caregiver and patient feedback.

In the future I will continue to involve patients and caregivers when designing the information resources which are meant to serve them and their health providers."

 

Meet 2017 Summer Studentship Recipient: Chelsea Yeo

CHILD-BRIGHT is proud to offer opportunities to help involve future generations of researchers, health professionals and leaders in patient-oriented work in Canada. Meet Chelsea Yeo, one of our 2017 Summer Studentship recipients, and read her reflections on her time at CHILD-BRIGHT.

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Name: Chelsea Yeo
Studying: BSc (Psychology), St. Francis Xavier University
Focus of internship:
CHILD-BRIGHT Strongest Families Neurodevelopmental project

"The opportunity I had to work on the Strongest Families Neurodevelopmental CHILD-BRIGHT research project opened my eyes to patient-oriented research and what it involves. I learned from collaborating with parent advisors, synthesizing their thoughts and ideas, and learned about the program's themes. Not only did this studentship give me the opportunity to experience a different type of research process, it helped me to see its value.

Everyone has a story that makes their experiences, ideas and thoughts unique.

As a young career-minded individual, I believe that working on the SF Neurodevelopmental project reinforced my pre-existing beliefs concerning the value of others’ experiences and will help me in my career going forward. Everyone has a story that makes their experiences, ideas and thoughts unique. This speaks to the importance of being open and able to listen.

Hearing the stories and speaking with parents about obstacles they’ve overcome allowed the intervention to be more specific to the needs of children with disabilities and their families. Specifically, there were many things that these parents experience that can’t be found in a book that made their advice invaluable to our project.

Going forward I will apply this lesson to my career path but also to life in general."

Meet 2017 Summer Studentship Recipient: Elisa Lau

CHILD-BRIGHT is proud to offer opportunities to help involve future generations of researchers, health professionals and leaders in patient-oriented work in Canada.  Meet Elisa Lau, one of our 2017 Summer Studentship recipients, and read her reflections on her time at CHILD-BRIGHT.

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Name: Elisa Lau
Studying: BSc (Integrated Sciences with a focus on Genomics and Neurobiology), UBC
Focus of summer internship:
CHILD-BRIGHT IMAGINE project

"I’ve learned so much over this past summer. 

In May I was invited to join the Friedman Lab at UBC as a research assistant on the IMAGINE project, which is a diagnostic study aimed at finding genetic causes for atypical cerebral palsy. It was an amazing opportunity to gain research experience within a clinical setting, and work with a complex team of health care specialists. This was especially valuable to me because I hope to pursue genetic counselling after completing my undergraduate education. 

I was also given the opportunity to design an information tool to describe metabolomics to the lay public.

I was fortunate to become involved in IMAGINE right from its beginning. This allowed me to not only directly witness the process of shaping an international research project, but also assist in many of its aspects. My mentors guided me through data handling, clinical chart reviews, specimen collection, presentation skills, and how to properly and respectfully interact with patients and their families.

I was also given the opportunity to design an information tool to describe metabolomics to the lay public. Having just completed an introductory cell biology course in the spring, it was quite the learning curve! Clinical knowledge aside, as an unseasoned student worker, some of the most mundane tasks like juggling a spreadsheet, or planning an effective filing system for data presented as unexpected little challenges to me. 

I learned firsthand that genetic counsellors can be researchers, writers, educators, project managers, and so much more.

Working with the Friedman team completely expanded my view of the genetic counselling profession beyond the limited scope of the information available online. I learned firsthand that genetic counsellors can be researchers, writers, educators, project managers, and so much more. It is a new and evolving field, and I am very excited to hopefully be part of it in the future. I am thankful to the CHILD-BRIGHT Network and everyone at the Friedman lab for providing me with this studentship experience." 

 

Meet 2017 Summer Studentship Recipient: Liel Cohn

CHILD-BRIGHT is proud to offer opportunities to help involve future generations of researchers, health professionals and leaders in patient-oriented work in Canada.  Meet Liel Cohn, one of our 2017 Summer Studentship recipients, and read her reflections on her time at CHILD-BRIGHT.

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Name: Liel Cohn
Studying: BSc (Life Sciences), McMaster University
Focus of internship:
CHILD-BRIGHT Training Program

"The CHILD-BRIGHT Summer Studentship  provided me with the incredible opportunity to learn about new developments in research and the importance of patient involvement. Through engaging webinars and interesting readings, not only did I gain a new perspective but I also developed tools that will help me incorporate patient-oriented research into my current and future research endeavors.

By educating patients and their families properly, and involving them in the research projects, physicians and scientists are able to provide what seems to be the most effective care, leaving the patient feeling more comfortable and confident than ever before.

For my final project, I received the task of constructing a Venn diagram that compares and contrasts patient-oriented research with traditional health research. This project helped me recognize the faults in the traditional methods, while also highlighting the challenges in properly incorporating patient-oriented research in common practice. Despite being challenging, I now feel that patient-oriented research is the future model for research studies and is essential in promoting and developing the concept of individualized medicine.

Overall, this experience has further established my interest in patient-oriented care and research in the health care field."