The Power of Team: Providing a Community of Support for Children with Rare Diseases

The power of team is undeniable – everyday, we see it in classrooms, at work, and certainly in sports. Working towards a common goal alongside others creates camaraderie, whether or not you actually reach that goal. Team IMPACT has harnessed this power to provide life-changing experiences to children with rare diseases who might not otherwise have that opportunity.

Living with a rare disease can be an incredibly challenging journey. Research shows that children with serious illness and disability are at increased risk of depression, anxiety, and social isolation compared with their typical peers[1].

Providing psychosocial support to children with rare disease and their families, Team IMPACT fosters a sense of belonging, reduces social isolation, and promotes emotional wellbeing. “To belong is a universal need,” says Karen Moore, whose 12-year-old son, Braxton, lives with spina bifida. “Harvard Men’s Lacrosse gave Braxton a chance to be on a team and a place where he belongs unconditionally, a place where his differences are seen as strengths and where he is valued. They give us strength, make the hard days a little easier, and help us to not feel isolated. The impact it has had on us will have a ripple effect that we will feel for many years,” she said.

How it Works

Children and teams are matched after completing a comprehensive assessment and orientation process with an Intake Coordinator and Match-Up Specialist. Then, Case Managers – Masters-level social workers or certified child life specialists — provide two years of active and consistent support to all participants.

Each match starts with the Case Manager understanding each family — their child’s diagnosis, the challenges they’ve faced, and how mentoring might provide benefits. From there, Case Managers create a personalized ‘game plan’ of social-emotional goals and activities, which guides the team in making these goals a reality. In addition to providing clinical support, Case Managers work with student-athletes to create moments of joy for Team IMPACT children, like attending games, teammates joining birthday parties and school events, or video chatting during clinic visits. Combined, these moments aren’t just moments, but real relationships fostering a sense of belonging for every child.

Larry Prout, Jr, a young man born with spina bifida, cloacal extropy, and omphalocele, as well as many other complex medical diagnoses, was matched with University of Michigan Football in 2016 at 15 years old.

“My world was always the hospital and home. Team IMPACT made my world bigger! It helped me connect with people and develop skills that will help me the rest of my life,” said Larry.

Raising Awareness for Rare Disease

While Team IMPACT’s primary focus is to provide social and emotional support to children and their families, it also plays a large role in raising awareness. By matching children with rare diseases with college athletic teams from across the country for long-term, therapeutic relationships, Team IMPACT fosters empathy, acceptance, and inclusion. In a recent survey of student-athlete participants, 93% report being more aware of people whose lives are different than their own, 93% are more aware of their ability to make a difference in the lives of others, and 86% are more civic-minded because of their involvement in Team IMPACT. Through Team IMPACT, participating athletes grow into more empathic and self-aware leaders – both on and off the field – and are primed to serve as rare disease champions in their communities.

Kennedy Headlee is an 8-year-old living with cystic fibrosis (CF). Her treatment includes up to 9 daily medications and twice daily airway clearance. Kennedy was matched with University of Arizona Women’s Gymnastics in 2021.

“Kennedy’s teammates always ask questions to learn more about her diagnosis,” Kirstin said. “They have learned what she goes through daily and even done research of their own.”

Getting More Girls in the Game

While Team IMPACT serves all children with serious illness and disability, there is a critical need to get more girls in the game. Research from the Women’s Sports Foundation shows girls and women who play sports have higher levels of confidence and self-esteem, and lower levels of depression than those who do not. However, 90% of girls and women with disabilities are not active in sport and face more barriers in sport than men who have disabilities.

In its 12-year history, Team IMPACT has matched over one thousand girls with teams across the country. However, 65% of referrals identify as boys, and there are dozens of women’s teams across the country waiting to find a match family.

Results

Children and their families immediately feel the impact of their new team and enhanced support system.

Payton, a young girl living with Juvenile Dermatomyositis (JDM), was matched with University of Indiana Women’s Basketball in 2021. The program has had a tremendous effect on how Payton manages her diagnosis and her emotional well-being.

“Payton’s involvement with the team has really grown her confidence,” Payton’s mother, Bobbie, said. “One area where this has helped tremendously is regarding her ability to speak with doctors and nurses about how she feels, side effects, etc. Previously it was even a struggle for her to make eye contact with adults.”

Data shows that parents are more confident in their children’s abilities to cope with their illness, including their ability to manage and control symptoms of anxiety, depression, frustration, and disappointment because of their participation in Team IMPACT. Parents also report that their children are more cooperative with their medical care and 86% are more physically active.

In Conclusion

Team IMPACT provides an environment that promotes resilience, empowerment, and inclusion – for children living with rare disease, their family members, and their teams. Since its inception, over 3,000 children have been matched with campuses across all 50 states, serving children with over 300 rare diseases and conditions. Together, we will build a community that champions the psychosocial well-being of every child with a rare disease.

To learn more about Team IMPACT, sign-up, or refer a child visit us online at www.teamimpact.org.

[1] Brady, A., Deighton, J., & Stansfeld, S. (2021). Chronic illness in childhood and early adolescence: A longitudinal exploration of co-occurring mental illness. Development and Psychopathology, 33(3), 885-898. doi:10.1017/S0954579420000206