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.

National Youth Advisory Panel Publishes Tips for Researchers

Our CHILD-BRIGHT National Youth Advisory Panel (NYAP) members have prepared a tip sheet to share with researchers hoping to increase youth participation in their studies or projects. To view these eight pieces of advice outlining important considerations to learn from youth with a lived experience with a brain-based developmental disability, download the PDF or take a look at the tips here:

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.

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

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.

“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