The CureDuchenne International Outreach Program: Expanding Duchenne Care Beyond Borders

By Debra Miller, Founder and CEO of CureDuchenne 

Duchenne International Outreach: Bridging Gaps in Duchenne Care 

At CureDuchenne, we have always believed in the transformative power of connection—the kind of connection that goes beyond borders, languages, and cultures to bring care, hope, and possibility to families affected by Duchenne muscular dystrophy. In 2024, through the CureDuchenne International Outreach Program, led by our Professional Development Team, Jennifer Wallace Valdes, PT, and Doug Levine, PT, our mission reached further than ever before. CureDuchenne impacted lives on the ground in Uganda, China, and Nepal, empowering communities to rewrite the story of Duchenne in their regions. Through collaboration, education, and advocacy, we helped lay the foundation for lasting change in areas where resources have been scarce and hope hard to find. 

Uganda: A Landmark Conference and New Beginnings

One of the most profound milestones of 2024 took place in Uganda, where we partnered with the Ayinza Duchenne Support Center to host the country’s first-ever Duchenne Muscular Dystrophy Insight Conference on August 23, 2024. This landmark event, held in Kampala, brought together an extraordinary group of almost 50 stakeholders, including physicians, physical therapists, government officials, and families. The conference agenda, presented by Jennifer Wallace and Doug Levine, featured standards-of-care sessions, case studies, and discussions on the role of government policies in addressing Duchenne. It was a moment of unity and purpose, with each participant working toward a shared goal: transforming care and support for Duchenne patients in Uganda. 

The impact of the conference was immediate and far-reaching. For the first time, the Uganda Ministry of Health formally recognized Duchenne as a condition requiring attention. The Ministry is now considering adding Duchenne to its list of approved diagnoses for government assistance with medical equipment, a move that could open doors to life-changing resources for families. The conference also catalyzed partnerships within Uganda’s healthcare community. The Uganda Pediatrician Association (UPA), inspired by the event, included Duchenne as a highlighted topic at its annual conference, with presentations by CureDuchenne’s partners from the Ayinza Duchenne Support Center and CoRSU Hospital. This event reached 150 pediatricians, many of whom are now equipped to identify and treat Duchenne—a crucial step in addressing the disease nationwide. 

Esther Nakamwa, Founding Member, Ayinza Duchenne Support Center, shared, “This conference brought new knowledge and enthusiasm to all participants, and I believe with continued awareness campaigns and advocacy, it will ripple out to positively impact the entire nation, fostering a more informed and proactive medical fraternity in matters concerning DMD.” 

A conference attendee commented, “Now I know how to diagnose DMD, which helps in early identification, management and prognosis, as well as for follow-up and to get support from organizations like the Ayinza Duchenne Support Center and CureDuchenne.” 

Another pivotal development in Uganda was the launch of the nation’s first dedicated Duchenne clinic at CoRSU Hospital on September 7, 2024. This clinic is already making an impact by providing diagnostics and care for patients who, in many cases, had not yet received an accurate diagnosis. The CoRSU team has since traveled across Uganda, educating numerous healthcare providers. Together with Ayinza, which is expanding its operations to include a social worker and new resources, these advancements represent a dramatic shift in Duchenne care in Uganda. For a country where awareness of Duchenne was extremely limited just a few years ago, this progress is nothing short of transformative. 

Leveraging Technology to Overcome Challenges

In Nepal, where the challenges of geography and resource limitations often hinder care, we took a different approach—harnessing the power of technology to bring awareness and resources to families. Working alongside Medharma Clinix Hospital in Kathmandu, CureDuchenne supported the launch of a nationwide awareness campaign aimed at addressing the significant gap in Duchenne diagnosis and care. The campaign utilized targeted social media outreach to connect with rural and urban communities alike, where smartphones are often the primary source of information. 

This initiative included creating educational videos and infographics translated into Nepal’s three most widely spoken languages, making resources accessible to families who might otherwise remain isolated from care networks. The campaign has already led to a measurable increase in inquiries to Medharma’s Duchenne clinic, connecting families to much-needed answers and support. For many, this is the first step toward understanding and managing Duchenne in a way that could change the trajectory of their lives. Nepal’s campaign also serves as a model for future initiatives in other underserved regions, showcasing how focused, tech-driven efforts can bridge significant gaps in awareness and care. 

Collaborating for Improved Care in China

Meanwhile, across the globe in China, a different yet equally powerful story of impact unfolded. In September, CureDuchenne’s Doug Levine , PT participated in the Global Reconnections Conference in Beijing, where we connected with local healthcare leaders, families, and advocates. This conference became a catalyst for long-term change, sparking new collaborations and laying the groundwork for improved care systems across the country. 

During the conference, CureDuchenne engaged in in-depth discussions with Professor Shiwen Wu, MD, PhD, Department of Neurology and his team from the renowned Third Medical Center of the Chinese PLA General Hospital (commonly known as 301 Hospital). These conversations explored opportunities to expand comprehensive care for Duchenne patients, ensuring that expertise and consistency could reach regions where specialized care is limited. Collaborative discussions focused on enhancing the existing treatment environment and identifying pathways to make multidisciplinary care accessible to more families.

The conference also inspired action at the governmental level. A representative from China’s Ministry of Health, Zheng Zhuoyin, attended CureDuchenne’s physical therapy sessions and was deeply moved by the practical, life-changing impact of proper Duchenne care. Following these sessions, she pledged to recommend adding Duchenne to the country’s list of government-funded diagnoses. If adopted, this policy could unlock critical funding for therapies and equipment, directly improving the quality of life for thousands of individuals living with Duchenne in China.

But the impact of our work in China did not stop at the conference. While in Beijing, we met with healthcare leaders to plan the next phase of our efforts, culminating in a return trip scheduled for March 2025. This multi-day initiative will include professional training for 35–40 physical therapists from across the country, certifying them in Duchenne-specific care. Additionally, CureDuchenne will host parent workshops in multiple cities, engaging hundreds of families and equipping them with the tools and knowledge they need to navigate the challenges of Duchenne. These efforts aim to create a sustainable network of trained professionals and empowered families who can carry forward the mission of improving care across China.

In parallel, CureDuchenne is collaborating with Chinese healthcare providers to establish monthly virtual meetings, enabling local professionals to assess patients and receive ongoing support from CureDuchenne’s experts. These sessions will ensure that progress continues long after the workshops have concluded, fostering a culture of collaboration and excellence in care.

Join Us in Creating a Better Future Around the World

We are considering initiatives in Mexico City, Morocco and other regions, where we aim to replicate the successes we’ve seen in Nepal, Uganda, and China. And we will continue our goal of expanding our video training library in multiple languages to ensure that families and healthcare providers around the world have access to the resources they need, no matter where they live.

The work we are doing globally is only possible because of the partnerships we have cultivated and the incredible generosity of our supporters. Thank you for joining us on this journey. If you would like to learn more or support CureDuchenne’s international outreach efforts, please contact us at  Education@CureDuchenne.com. Together, we are creating a world where no family is left to face Duchenne alone, and every child has the opportunity to thrive.