A vital part of the work we do at Cassie + Friends stems from our involvement in important research in the pediatric rheumatic (PR) disease community. Over the past decade, we’ve helped endow a research chair, fund a new international post-doc, build one of only three PR labs in Canada, launch a pain-app and peer support program for teens and even develop a series of mindfulness videos that have now been seen by millions around the world.  

Most important, though, we want to make sure the research that’s meant to transform the lives of youth and families affected by rheumatic diseases includes youth and family members from the very start. 

Did you know?

Getting involved in research is a great way to give back, get community service hours for school and even build your resume! Learn more about how C+F is connecting youth like Sofia (below) and their parents to exciting research opportunities across Canada and the world.

Our Youth and Parent Research Advisors play an important role in helping to influence, design and share research and the findings from research by putting their unique experiences and perspectives as patients to work! We match youth and parents with leading PR researchers to share ideas, priorities and problems that need to be solved. Take a minute to think about your answers to these questions: What’s important to you when you go see the doctor? What are your biggest challenges with your condition? What are your hopes/dreams for the future?

Whatever your answers were – that’s all you need to get started as a youth research advisor and make a big difference! Below you’ll meet Sofia, a young person who was matched through Cassie + Friends’ to an exciting new study that researchers hope will change the way youth and parents make informed decisions about their care when they’re first diagnosed.

Tell us about yourself.

My name is Sofia, I’m 21 and I am a full-time student at BCIT. I also work as a tele-fundraiser for Stratcom, raising money for charitable organizations and endeavors. I was diagnosed with JIA in winter 2011 and I have lived with JIA for 10 years now.

What research are you currently involved in through Cassie + Friends? 

I’ve had the chance to work with several studies coordinated and organized by my previous doctors and doctors I know personally. I’m currently working with Dr. Guzman from BC Children’s Hospital to help refine certain strategies to ease communication between doctors, patients, and parents for children with JIA during initial diagnosis. So far, I’ve been a part of the testing and feedback process for some new tools that I think will really help patients and their families.

Why did you want to be a youth research advisor?

As the JA community is mainly made up of children and underaged persons, it can sometimes feel like all the information and supports are very parent-oriented and parent focused. I know that as a teen and a young adult I often struggled to feel prioritized because so many of the conversations and other aspects of my disease management were geared towards my parents. I sometimes felt overlooked and forgotten – even though I was the one suffering from arthritis, not my parents. So, I’m very glad that C+F is taking strides to correct that and allow for an equal platform by involving youth directly. Being a youth research advisor has allowed me to have a voice in the community. 

How does it work? How much time does it take?

Usually, my role has involved a mix of online and physical meetings and testing. Depending on the study, you may have more phone calls/zoom meetings than physical meet-ups or the opposite. 

What other projects have you been involved in? What advice do you have for youth who want to get started?

I’ve been helping BC Children’s Hospital, The Arthritis Society, and Cassie + Friends with research studies and volunteering since I was first diagnosed. I helped with LEAP, an activity-based research program learning about physical activity and its effects on flare ups and overall health in children with JIA. I have also helped with several group initiatives and medical research studies including bloodwork analysis and once analyzing components of tears and how changes in my immune system and meds may affect my tears. I also helped organize and volunteer for Camp Capilano and Camp Sunrise, and several other online websites and educational endeavors to help kids and teens with JIA learn about and manage their disease.

If you are new or want to start out helping in the community, I recommend reaching out to your doctors and nurses first and asking around with C&F and the Arthritis Society if they have any research or volunteer opportunities you can help with. 

What skills do you bring to the research table?

I’m certain that one of the reasons they bring me on is for my blunt and straightforward constructive criticism! I speak my mind and tell them what I think whether it’s good or bad so that they can make changes and learn for next time. 

What is your hope for the future of pediatric rheumatic disease research?

For me, I want the community to allow more youth and young adult voices to be heard and I want to help kids so they don’t have to face the same struggles I did. I hope that in time, the parents and the patients feel equally included. I hope that in the future kids will be able to feel in control and confident about being able to manage their disease and will have role models and people to talk to who have lived their struggles and can answer the hard questions. 

Any advice to youth who are just learning to manage their condition or grow their confidence in being a part of their own healthcare?

My biggest piece of advice is not to hold back. As youth, we too can tell the doctors when they need to change things to better help us. If you think they did something wrong, tell them. If you have constructive criticism, tell them. If someone talks about you to your parents when you’re in the room and you don’t like that, tell them. I’ve had to talk to people and mention ‘please talk to me, my parents are here for support’ several times. It’s not easy, but it feels good! 

No matter what, you are important, this is your health, your life, your choice. Lean on your support structure, learn as much as you can, but remember that this is about you, and you have the right to be heard and to have your point of view considered for decisions that will affect you. Stand your ground and allow yourself to be heard. This is your life, not your parents.