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. 

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!

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.

“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!

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

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.

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

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.

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

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.

Meet the other youth advisory panel members:

MATHIAS

MAYA

HANS

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

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.

Meet the other youth advisory panel members:

MATHIAS

MIKE

HANS

LOGAN

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