Cure CMD: Harnessing the Power of CN Pathway LMS for Community-Led Research

Organization Cure CMD


Product Used: Pathway LMS

User Size: 200

About Cure CMD

Founded in 2008 by three passionate parents whose children navigate the challenges of Congenital Muscular Dystrophy (CMD), Cure CMD stands as a beacon of hope and a catalyst for change. At its core, the organization is driven by a mission to advance research, find effective treatments, and enhance the lives of those grappling with CMD. The values of hope, collaboration, responsiveness, proactivity, and community-led efforts to make a meaningful impact. Looking ahead, Cure CMD is pursuing a focus on responsive support for the CMD community, increased funding for strategic research, and the growth of the scientific community dedicated to CMD research. Their proactive approach includes tailored content and connections to meet evolving community needs and strategic partnerships with organizations sharing a similar mission. With an unwavering commitment to fostering hope, Cure CMD envisions a future where individuals affected by CMD not only receive optimized care and support but also benefit from an expanding global outreach effort. As they continue to pioneer change, Cure CMD emerges as a leader, shaping a world where those living with CMD can thrive and live life to the fullest.

Why Cure CMD Chose CN

After receiving another grant in 2022, the Cure CMD reached out to CN to launch a new community program called “2023 CMD Research Roundtable”. This program aimed to facilitate the CMD community stakeholders (e.g., patients, family, caregivers, researchers, clinicians, industry partners, and policymakers) to share and learn about related science, current and potential future research, and to agree on attainable treatment goals based on priorities for symptom management. The program chose the CN LMS because of its unique strengths in academic social networking. The program leaders believed that the social discussion features and the ease of use of the CN can effectively serve their goal – allowing every participant to have an active voice in directing the research roadmap for congenital muscular dystrophy.

Collaborative Launch and Innovative Uses

The new client kick-off meeting for Cure CMD was in Nov 2022. Both the admin and pedagogy training sessions were delivered in early December. After that, the CN team quickly helped set up the initial learning activities, which included a CN orientation, netiquette guidelines, self-introduction post prompts, and a custom-created CN Zoom App tutorial video.

While putting learning resources and activities together, the Cure CMD team encountered a challenge: how to engage subgroups (e.g., different stakeholders and CMD subtypes) with relevant content? The CN function and pedagogy lead had an immediate meeting with the client. After analyzing potential options, the team decided to execute an efficient solution – putting members into groups. This allowed the posts and messages for specific groups while keeping everyone in one course. On the other hand, resource links were clearly labeled throughout activity instructions, so members could easily find content relevant to them. If they were ever interested in exploring further, they had the option to do that.

The CN team assisted the client with a couple of other issues before they successfully launched the program to over 140 members in late January 2023. From then to November, the program ran fairly smoothly. As the program director, Rachel Alvarez, shared, “I was able to make an easy-to-follow activity list for participants who joined at any time during the course period”.

Empowering Cure CMD's Vision of Success

Cure CMD used its CN site to announce synchronous meeting sessions, share meeting and presentation recordings, distribute readings, and invite participants to post to share reflections and takeaways. It was exciting that a vibrant science learning community was formed.

Comparing the pre- and post-survey, patient and family participants reported an improved understanding of the pathology and current state of research for their CMD subtype. In the wrap-up session, the majority recognized the value of the Research Roundtable. They expressed appreciation for the small community formed by patients, their families, and researchers and found the research helped them set realistic expectations on treatment and symptom management. Many hoped to remain connected with one other and the researchers in the field.

The member feedback indicates achievement of the program goals. CN is delighted to contribute to the goal and support the participants’ needs to remain connected – after the program, the participants can still access their CN course for content and posting.

The CN team has been amazingly responsive and helpful - this team makes the product.

Rachel Alvarez

This is an image of Rachel Alvarex the Executive Director of Cure CMD

Cure CMD’s Best Practices

The CMD Research Roundtable program sheds light on using CN for academic social networking and community building. What lessons can you draw from their experience?

First, select a learning platform whose strengths and characteristics fit your project goals. Cure CMD’s organizational value is collaboration and community-led efforts in congenital muscular dystrophy research and treatment. The purpose of the Research Roundtable project was to foster conversations and understanding of the subject. CN was designed and developed for such purposes. So, when the platform was selected, the project was already set in the direction of success.

Regarding implementing the CN, Rachel Alvarez’s advice is: “It’s ok to make mistakes while trying to figure out how to create lessons and structure. Everything can be marked as unpublished until you figure it out”. In addition to the flexibility of the CN platform, the reliability of both the technical infrastructure and the committed support staff should boost your confidence. As stated by Rachel, “the platform never had any performance issues or downtime and the CN team is amazingly responsive and helpful.”

Another piece of advice from Cure CMD is to encourage participant posts. Listening to community stakeholders’ voices is critical to Cure CMD’s mission. If your program shares a similar mission - you want to hear quesitons and comments from people to get a sense of where they are at, what they are having trouble with, and where they seem to need additional guidance, and you work with ongoing feedback, you should encourage your useres to post their thoughts and ideas. CN provides a perfect space and tools just for that!

If your organization is interested in learning more about this use case and the CN Pathway LMS, please feel free to schedule a call/live demo with the CN team.

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