The Cassie + Friends Care & Research Network (CREW) launched in November 2021 as an opportunity for Pediatric Rheumatology clinics in Canada to access up to $15,000 in funding towards improving the care experience at their clinic or advancements in research. To kick off CREW, we’ve highlighted stories from members of our CREW – patients, parents, and healthcare professionals, just like pediatric physiotherapist, Cara Kaup, who has shared her experience with Cassie + Friends below.

Introduction

Hi, my name is Cara Kaup and I am a pediatric physical therapist who has worked with children with rheumatic diseases for over 25 years. The Pediatric Rheumatology Clinic (PRC) Team in Edmonton were delighted when Cassie + Friends approached us to plan a Family Day in Edmonton in 2019.  We are all passionate about the care for children with rheumatic diseases and we believe peer support is such an important thing to foster meaningful connections between people who are experiencing a similar journey and to learn from one another’s experiences.

What was it like to work with Cassie + Friends?

Helping to organize the 1^st Cassie + Friends Family Day Event in May 2019 was a highlight of my career. It was a day of education, fun, laughter, tears and sharing.  Some of our kids had not yet met another child with a rheumatic disease and they were so excited to play with their “new friends.”  Our teens had a chance to connect with the C+F youth leaders and other teens while doing fun activities. Parents were able to connect with other parents and share their experiences, challenges and helpful tips. The education sessions were informative and very well received by families. However, one of the highlights of the day was at the end when our “PRC graduates” shared their experiences as a panel.  I was so proud to see all of our “kids” that I had worked with over the years share their challenges and advice with the audience.  They are now mature young adults with strength and confidence and so much to share!

The Biggest Highlight

What struck me the most was how the young adults felt their disease had helped form the person they were in such a positive way. They gave so much HOPE to our parents and kids that things will work out and even though they may still encounter challenges, they will get through them. It was wonderful to see so many of our kids and families come together from all over the province to share in such an amazing day!

Cassie + Friends transition to virtual events has been a game changer for families

As the pandemic has changed so many things in our world, C+F has continued to build meaningful connections and provide education through virtual sessions.  So many parents and kids want to learn more about their condition.  C+F has partnered with clinics from across Canada to provide expert-led sessions on a wide range of topics.  They incorporate the medical education and patient experiences together.  The lived experience that kids and families from across the country have shared is invaluable! This new way of delivery has managed to reach out to many families across the country and now even further, connecting to people from a number of countries around the world.  Cassie + Friends is truly building a community to help children and their families face the challenges and experience of living with a rheumatic disease.

Why I’m a part of the Cassie + Friends CREW

I will continue to donate and raise money for Cassie + Friends because I truly believe they are dedicated to help and improve the lives of children with a rheumatic disease.

Interested in learning more on how you can make an impact right at your local clinic? Click here to learn more and/or make a donation.