Meet Claire Dawe-McCord, 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.

Claire Dawe-McCord, 21

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

I am going into my third year of the Bachelor of Health Sciences program at McMaster and I am currently co-chairing the Kids Come First Ontario Health Team.

WHAT ARE YOUR PASSIONS, INTERESTS, AND HOBBIES?

I have been modelling on and off since I was 14, which has been an incredible opportunity for me. I have so far been to Singapore, Tokyo, and New York City for work and hopefully I can get back into it when I am done school because I love to travel. When I am at home, I like to go for bike rides with my friends and take care of my rapidly expanding garden.

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

I was diagnosed with ADHD and multiple rare musculoskeletal disorders when I was in high school. Learning how to control my symptoms was quite the learning curve for me and I hope that through this work I can make that process a little bit easier for other children and youth.

How did you hear about CHILD-BRIGHT?

I heard about CHILD-BRIGHT through Jan Willem Gorter who is a professor at McMaster and a Principal Investigator of the CHILD-BRIGHT READYorNot™ Brain-Based Disabilities Project.

WHAT ARE YOUR HOPES FOR THE NATIONAL YOUTH ADVISORY PANEL?

I hope that one day we can have representation from all of Canada's populations and that together our work can improve the quality of life for all youth with disabilities.

Meet Gillian Backlin, 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.

Gillian Backlin, 24

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

I recently completed the technical writing certificate at the British Columbia Institute of Technology and am looking for work in the communications field. With my training, I am able to write and format technical documentation such as manuals, training materials or any other materials a company may need. In addition to my technical writing skills, I also enjoy more informal writing opportunities, such as blogging, social media and content writing. I would love the opportunity to work in a community-centred environment where I can utilize both my technical and informal writing skills.

WHAT ARE YOUR PASSIONS, INTERESTS, AND HOBBIES?

I run my own blog/online store called Spastic AND Fantastic. My goal in creating this platform was to bring attention to the stigmas we as society put on labels-such as disabled. Other than that, I love volunteering, spending time with my friends, family and dog!

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

Yes, I have cerebral palsy. Having CP has impacted every aspect of my life; everything down to the way I see and interact with the world. Being born with this disability, neither my loved ones, nor myself know any different.

HOW DID YOU HEAR ABOUT CHILD-BRIGHT?

From my volunteer work at Sunny Hill.

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

I have a passion for youth involvement and advocacy. I learned the importance of personal involvement from my years of being a patient.

WHAT ARE YOUR HOPES FOR THE NATIONAL YOUTH ADVISORY PANEL?

To meet like-minded individuals and do my part in making others feel heard.

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

Nong Khiaw, Laos

Gullfoss, Iceland

Cantley, Quebec

Pulau Dayang, Malaysia

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.

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 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

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.

Meet the other youth advisory panel members:

MAYA

MIKE

HANS

LOGAN

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