Beam CF Youth Program Launched for Children With CF

Exercise program a collaboration with CF Yogi, Johns Hopkins CF Center

Teresa Carvalho, MS avatar

by Teresa Carvalho, MS |

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An illustration shows children playing and exercising.

CF Youth, a new exercise program created by Beam for children living with cystic fibrosis (CF), was launched on the company’s online platform.

The initiative, created in collaboration with CF Yogi and Johns Hopkins Cystic Fibrosis Center, can be accessed by caregivers and healthcare providers.

Regular exercise has been shown to provide several benefits to people with CF, from improving quality of life and physical and mental health, to delaying disease progression.

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Free online sessions promote physical and mental wellness

The new program is currently free and can be accessed globally. It is meant to help children implement healthy habits so that they become healthy teenagers and adults.

“We know how challenging it can be to engage children in physical activity,” Pamela Scarborough, Beam’s co-founder and clinical director, said in a press release provided to Cystic Fibrosis News Today. “It’s not unusual for families to have preconceived ideas around what it means to be active, such as feeling a need to compete in team sports. There are more options than this. We want to introduce children to lots of different types of movement so they can find something that they love and want to commit to as they get older.”

CF Youth hopes to help children find the physical activity that they enjoy, and also offers sessions to promote mental health. Available classes include:

I’d like us to help kids with CF to build relationships with other kids with CF that are not exclusively about having CF

Children also may have training sessions on how to prepare for pulmonary function tests in the clinic and for airway clearance at home.

“Enhancing airway clearance and exercise has the potential to improve the lung function and overall health of children with CF,” said Peter Mogayzel, MD, PhD, Johns Hopkins CF Center’s director. “I am excited to be part of the development of Beam CF Youth, which offers wide ranging content to engage children with CF.”

Instructors are CF clinicians and patients or parents of children with the condition who are certified exercise professionals. This is the case with yoga teacher Myra Giaffoglione, mother of two kids with CF and also co-founder of CF Yogi.

“The best piece of parenting advice I ever received: we can’t shelter our children from the storm, but we can equip them to weather it. Maybe even dance with them in the rain!” Giaffoglione said.

The online program also includes mindfulness sessions to help with anxiety.

“I think it’s instinctual for parents to want to protect our children from things that could hurt them, but deep down we all know we only have so much control,” Giaffoglione said. “One thing we can do is provide tools for them to choose from and use to help themselves. For me, mindful movement is one of those tools. This is what we are bringing to Beam through the CF Youth program.”

Participants can attend the program’s live weekly classes and monthly events. Caregivers can sign up with their own profile and add their child’s profile to get free access. The videos include other CF children attending the sessions.

“I’d like us to help kids with CF to build relationships with other kids with CF that are not exclusively about having CF,” said Katie Malik, CF Yogi’s co-founder and executive director, and a CF patient. “Activity works on an interpersonal level as much as it does a physical level. If the joy that they find with other kids is centered around something physical, that is an amazing thing that we can play a part in.”

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Healthcare providers can use code to gain free access to program

CF Youth can also be used by healthcare providers. “Not every CF center has a physical therapist to spread the word about the importance of activity and to guide children with CF on the best exercise for them,” said Karen Von Berg, physical therapist at Johns Hopkins.

“I see this program as a valuable resource to care teams, whether or not they have a physical therapist at their CF center,” she added.

CF clinicians should use the code BEAM-GLOBAL-CFY-CLINICIANS for free access to the content.

The program is sponsored by Vertex Pharmaceuticals through a Vertex Circle of Care grant, intended for innovative patient-centric programs that help people with CF to live fuller, more engaged lifestyles.

“This is the pilot phase,” Scarborough said. “We aspire to expand this program to support all ages, a greater range of needs and offer more variety of classes.”

“We believe in a holistic approach and the power of partnerships, so we are looking for organizations to collaborate with to bring this to life,” she added.

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