As children with Duchenne muscular dystrophy grow, families often find themselves navigating new questions that extend beyond medical care. How can parents encourage independence while still providing support? What resources can help prepare for adulthood? And how do mental health and emotional well-being fit into the journey?
At the CureDuchenne FUTURES 2026 Annual Conference, social workers Kayla Richards and Ruchi Patel, CureDuchenne Family Support Manager Kelsey Saxon, and pediatric psychologist Natalie Truba, PhD, explored the challenges and opportunities that come with growing up with Duchenne. Their message was both practical and reassuring: there is no single “right” way to approach transition, and every family can move at a pace that fits their unique needs.
Building Community Along the Journey
The session began with a conversation about community and support systems. Families shared experiences of finding connection through schools, faith communities, scouting programs, social media groups, and the broader Duchenne community.
Many participants acknowledged that diagnosis can change relationships. Some friends and family members become strong sources of support, while others may pull away because they are unsure how to help. The panel emphasized that community can take many forms and encouraged families to seek connections that provide understanding, encouragement, and practical support.
For many families, connecting with others who understand the realities of Duchenne can reduce feelings of isolation and provide valuable guidance throughout the journey.
Encouraging Independence Starts Early
A major focus of the discussion centered on helping children gradually take a more active role in their own care.
Rather than viewing adulthood as a sudden transition at age 18, the presenters encouraged families to think of independence as a skill that develops over time. Small opportunities—such as learning medications, speaking during clinic visits, understanding school accommodations, or participating in decision-making—can help build confidence and self-advocacy skills.
The panel stressed that supporting independence does not mean stepping away completely. Parents remain important partners in care, but children and young adults benefit from opportunities to practice making choices and expressing their preferences in safe, supportive environments.
As one speaker noted, every child is different, and families are the experts on what level of independence is appropriate at any given stage.
Preparing for School and Future Goals
School can be an important place for developing self-advocacy skills.
The presenters encouraged families to involve children in conversations about their Individualized Education Program (IEP) or 504 Plan and help them understand the accommodations available to support their success. As students get older, learning how to communicate their needs to teachers and staff can build confidence and prepare them for future transitions.
Families were also encouraged to begin discussing future goals during adolescence. These conversations do not need to focus solely on college or careers. Volunteer opportunities, hobbies, leadership activities, and personal interests can all help young people explore their identity and discover what brings them purpose and fulfillment.
The presenters emphasized that helping young people identify and pursue their interests early can make the transition to adulthood feel more meaningful and less overwhelming.
Understanding the Transition to Adulthood
As individuals with Duchenne approach adulthood, families often face important decisions related to healthcare, legal planning, and decision-making authority.
The panel reviewed several options that families may consider, including medical release forms, supported decision-making agreements, powers of attorney, and guardianship arrangements. Rather than assuming one approach fits every family, the presenters encouraged families to explore options that preserve autonomy whenever possible while ensuring appropriate support remains available.
They also recommended beginning these conversations before age 18 to allow time for planning and consultation with legal professionals familiar with disability-related issues.
Mental Health Is Part of Duchenne Care
The second half of the session focused on mental health and the growing understanding of how Duchenne affects the brain as well as the muscles.
Dr. Natalie Truba explained that Duchenne and Becker muscular dystrophy are neurodevelopmental conditions, meaning that dystrophin deficiency can influence cognitive, emotional, and behavioral functioning. Research has shown increased rates of challenges such as attention-deficit/hyperactivity disorder (ADHD), anxiety, autism spectrum disorder, learning difficulties, and emotional regulation concerns among individuals with dystrophinopathies.
Importantly, these challenges are not simply emotional reactions to living with a chronic condition. They are often directly related to the role dystrophin plays in brain development and function. Understanding this connection can help families better recognize concerns and seek appropriate support.
Supporting Emotional Well-Being at Every Age
The session highlighted several key periods when emotional support may be especially important.
Children may begin noticing differences between themselves and their peers as physical changes become more apparent. Adolescents often face questions about identity, friendships, independence, and future goals. Young adults may experience concerns related to employment, relationships, caregiving needs, and long-term planning.
Throughout these transitions, open communication and access to supportive resources can make a meaningful difference.
The presenters encouraged families to consider counseling, peer support programs, social skills groups, child life services, and recreational opportunities that promote connection and confidence. Programs such as CoachArt,iSocial, and other community-based supports were highlighted as examples of resources that can help individuals build relationships and explore interests outside of medical settings.
Key Takeaways for Families
The session concluded with a powerful reminder that growth and transition are ongoing processes.
Families were encouraged to:
- Build and maintain supportive communities.
- Create opportunities for children to practice independence.
- Involve young people in medical and educational decision-making.
- Start transition planning early.
- Recognize that mental health is an important part of Duchenne care.
- Seek support when emotional, behavioral, or cognitive challenges arise.
- Focus on strengths, interests, and opportunities for meaningful engagement.
While every family’s journey is different, the presenters emphasized that preparing for adulthood is not about stepping away from support—it’s about helping young people develop the skills, confidence, and resources they need to thrive throughout every stage of life.
Need Personalized Support for Your Duchenne Journey?
The CureDuchenne Cares team provides personalized guidance, educational resources, and one-on-one support to help families make informed care decisions throughout every stage of Duchenne.
- Register for the CureDuchenne FUTURES Annual Conference to hear the latest in Duchenne care
This content is intended for educational and informational purposes only and should not be considered medical advice. Always consult your healthcare provider before making decisions about your medical care or treatment plan.
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