Johns Hopkins CF Center, CF Yogi, and Beam are teaming up to develop trusted online exercise resources for young people with CF!
This new collaboration, funded by a Vertex Circle of Care Grant, will ensure the development of live and on-demand online exercise and wellbeing resources for children and adolescents with CF.
Kids Yoga is back (and better than ever)!
Kids have always been central to CF Yogi’s mission to support wellness of body, mind, and spirit in the CF community. From our earliest days when we launched in 2019, Kids Yoga was a part of our program and we were SO encouraged by the response of the families who took part! We loved seeing kids with CF flourish as they found joy in their bodies and learned to trust their breath. Plus, since many kids with CF have never met another kid with CF outside their own family, the look of delight on their faces when they realize that other kids in the virtual “room” have CF too is simply priceless!
The success of our kids classes showed just how much interest there was in yoga and mindful movement for young people with CF, and the popular demand for more offerings convinced us that we were on to something special.
Teaming up with CF Pediatric Specialists for Clinically-Informed Content
Though the feedback we got from our classes was universally positive, we also recognized that as a community-led organization, there were some things that we just didn’t have the expertise or resources to be able to tackle on our own. For one thing, CF pediatric physical therapists/physiotherapists know much more than we do about what exercises are beneficial for growing kids, and what children with CF need at different ages and stages of development. For another, working with kids also requires appealing to their caregivers, and our little organization just didn’t have the manpower to do the outreach and support that CF caregivers really need as they wrangle the complex needs of their children and their family’s daily lives!
Thanks to a grant from Vertex Pharmaceuticals (the heroes who developed Trikafta), we are collaborating with leading CF pediatric physical therapists from Johns Hopkins CF Center and Beam to develop new live and on-demand virtual exercise classes that are safe, effective, and highly beneficial for people with CF ages 4-17!
To start, CF Yogi will be teaching live online yoga classes for several different age groups. We also plan to offer bite-sized pre-recorded videos appropriate for those with shorter attention spans. Our colleagues at Beam will be hosting these classes, videos and a variety of other activities that cater to CF youth on their amazing platform. This is where you come in! We need to know what activities the CF Community truly wants to see…
Calling all CF Kids, Caregivers, and Clinicians!
We need your voice! We’re holding focus groups in early April that will help us understand your content preferences, online safety concerns, any barriers to exercise that you face, and ideas you have for making exercise fun and engaging for children and young people living with CF. Your feedback through focus groups and surveys will help us develop live and on-demand content, launching in summer of 2022!
Our focus groups are currently recruiting:
- People with CF ages 4-17
- Caregivers to people with CF aged 4-17
- Specialist pediatric clinicians
While this news means that Kids Yoga is coming back and will be better than ever for our CF Yogis, this project is bigger than just us, and this is bigger than (just?) yoga. This is a chance for kids with CF to plant the seeds for healthy habits and mindful movement, no matter what form of exercise they’re interested in.
Please sign up for a focus group (or optional survey) here to lend your voice to this collaboration! We invite you to share this link freely with others in your CF network and encourage them join in, too!
Stay tuned for more as this project really gets rolling!
