Engaging the Clinical and Patient DMD Community at the 2025 FUTURES Conference: Heather Medlin, MSW

WATCH TIME: 6 minutes

"We’re really looking to bring everyone together under one roof, in one space, to both focus on community care, answer questions, and, most importantly, give people time to connect."

Throughout the 2025 calendar year, CureDuchenne will host free full-day workshops and dinner sessions across the country to provide essential resources and highlight the latest advancements in care for patients with Duchenne muscular dystrophy (DMD) and their families. These workshops will feature expert-led discussions on multidisciplinary care, physical therapy techniques, and clinical trial updates. Local healthcare providers and CureDuchenne’s scientific team will engage with families in an interactive setting, offering practical guidance and access to valuable community resources. Each workshop includes an “Open House” with local support organizations, as well as breakfast, lunch, travel assistance for eligible attendees, and translation services to ensure accessibility for all participants.¹

In addition to these regional events, CureDuchenne will host its annual FUTURES National Conference, held May 22-25 at the JW Marriott San Antonio Hill Country Resort & Spa in San Antonio, Texas. This multi-day conference will bring together families, caregivers, clinicians, and researchers to explore groundbreaking treatments, care strategies, and emerging research in DMD and Becker muscular dystrophy. Attendees will have opportunities to engage in expert-led sessions, participate in networking events, and enjoy community-building activities, including a dedicated gaming lounge for children. To foster inclusivity, translation services will be available for all sessions, and a virtual attendance option will be offered.

Building on the insights and resources offered through CureDuchenne’s 2025 events, Heather Medlin, MSW, the associate vice president of community outreach of the organization, recently sat down for an interview with NeurologyLive^® to discuss key issues surrounding Duchenne care. In the interview, Medlin explored how evolving treatment options are reshaping the long-term care needs of individuals with Duchenne. She also addressed the significant barriers to accessing Duchenne care and discussed potential solutions to improve healthcare equity for affected families. Furthermore, Medlin highlighted the importance of integrating culturally and linguistically inclusive tracks to foster better patient and caregiver engagement, ensuring that everyone has the opportunity to fully participate in the Duchenne care community.

REFERENCES
1. CureDuchenne Announces Educational Events for Families and Caregivers of Individuals with Duchenne or Becker Muscular Dystrophy. News Release. Published January 31, 2025. Accessed February 13, 2025. https://cureduchenne.org/all-news/cureduchenne-announces-educational-events-for-families-and-caregivers-of-individuals-with-duchenne-or-becker-muscular-dystrophy-2/