A new online exercise and yoga program for children and adolescents living with cystic fibrosis (CF) is in development by Beam and CF Yogi, and will launch — with no costs to youth — in August on Beam’s virtual well-being platform.
The program, created with the Johns Hopkins Cystic Fibrosis Center, is targeted to CF youth ages 4 to 17 — who are now being sought, along with their caregivers, to provide patient feedback for use in the program’s development.
The online platform is offering adults with CF free access through June to live and on-demand training and educational programs in partnership with the Cystic Fibrosis Foundation. At its launch, program content for children and adolescents will be freely available to these patients worldwide.
CF Yogi also will continue its role in providing free online yoga classes to the CF community.
“Beam and CF Yogi’s reputation as successful content and platform providers for adults with CF makes them ideal collaborators for this program,” Peter Mogayzel, MD, PhD, director of the Johns Hopkins CF Center, in Maryland, said in a press release provided by email to Cystic Fibrosis News Today.
Focus groups of young CF patients, their caregivers, and specialist pediatric clinicians are currently being recruited to provide feedback for the program’s developers. That feedback will guide the content created by Beam, CF Yogi, and the Johns Hopkins multidisciplinary team to ensure the program best addresses the particular needs of CF children and teens.
The 90-minute focus groups are set to start this week and will focus on barriers to exercise, content preferences, security, and making exercise fun. An online sign-up form is available.
Beam will provide the online platform and technical support, as well as interventions to change behavior and strategies to enhance community engagement.
“There is no ‘one-size fits all’ solution to exercise, and personal preference, variety and enjoyment of exercise are key to long-term engagement, so co-designing with the community is key,” said Pamela Scarborough, Beam co-founder and clinical director.
Community-led CF Yogi has offered well-received Kids Yoga classes in the past, but lacked the clinical guidance to ensure the content would be safe and beneficial for children with CF.
“Online live group classes provide an opportunity for collective joy and shared understanding,” said Katie Malik, co-founder of CF Yogi.
“These environments let people with CF grow relationships around a shared experience that isn’t necessarily ‘about’ CF,” Malik added.
The program is funded by Vertex Circle of Care, a grant opportunity from Vertex Pharmaceuticals that supports innovative patient-centric programs for the CF community. Vertex has developed CFTR modulators — a specialized group of CF therapies designed to address the disease’s underlying cause by targeting specific CFTR protein defects.
CFTR defects lead to the excess buildup of thick, sticky mucus in the lungs, making it difficult to breathe and increasing the risk of infections. Regular exercise has been shown to improve physical and emotional health, and quality of life, and to slow disease progression. For those who respond to modulator therapies, it can help enhance physical fitness and maintain a healthy body weight.
Despite these benefits, adherence to regular exercise can be challenging for many CF patients.
The program’s live and on-demand classes aim to address barriers to exercise such as CF-related symptoms and a high treatment burden as well as a lack of enjoyment and low self-confidence. Fear of infection, including COVID-19, also has placed limits on the exercise habits of CF patients in the last two years.
Due to the growing adoption of telehealth and online exercise created in response to the COVID-19 pandemic, CF community members now can access specialist support from home without the need for hospital appointments.
The grant application highlighted that exercise services are already available to adults with CF, but there is a lack of trusted resources for children and adolescents with CF.
Because most CF children have never met another CF child outside the family, the program will allow patients to connect with their peers as they develop healthy behaviors and effective, enjoyable movement habits at a young age, the providers say.
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