Setting specific objectives and establishing strategies geared toward progressing treatments and cures is a critical, yet sometimes difficult, task for patient organizations. Especially in disease communities with many organizations, it can be challenging to know where an organization fits within the broader movement. Establishing a strategic plan, or roadmap, that lays out the knowledge gaps, milestones, and research priorities for a disease cure is a vital way to both establish an organization’s mission and encourage collaboration among stakeholders and organizations. During the webinar, leaders of the National Multiple Sclerosis (MS) Society discussed its Pathways to Cures research roadmap, a strategic plan aimed at accelerating the development of MS cures. Speakers highlighted the roadmap creation process, which included garnering global consensus on MS cures and establishing implementation strategies. The webinar was a collaborative effort between FasterCures and the National MS Society and is part of our continuing webinar series from The Research Acceleration and Innovation Network (TRAIN) program.  
 

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Moderator  

Kristin Schneeman  
Senior Director, FasterCures, a Center of the Milken Institute  

Speakers  

Cyndi Zagieboylo 
President and Chief Executive Officer, National MS Society  

Tim Coetzee 
Chief Advocacy, Services & Science Officer, National MS Society  

Bruce Bebo  
Executive Vice President of Research, National MS Society 

 Shawna Golden  
Vice President of Global Initiatives, National MS Society 
 

Summary

Establishing and developing a research roadmap that outlines clear objectives is a central activity for many patient foundations whose missions seek to advance biomedical research and development. Throughout the history of The Research Acceleration and Innovation Network (TRAIN), FasterCures has provided resources and insights from the patient organization community to leverage innovation from those that have established effective strategic plans and goal implementation strategies to accelerate progress toward treatments and cures. To explore such issues, Kristin Schneeman (senior director at FasterCures, a center of the Milken Institute) moderated a TRAIN webinar co-hosted by the National Multiple Sclerosis (MS) Society, featuring Cyndi Zagieboylo (president and CEO), Tim Coetzee (chief advocacy, services & science officer), Bruce Bebo (executive vice president of research), and Shawna Golden (vice president of global initiatives), to share how their organization established the Pathways to Cures research roadmap. The National MS Society team discussed the evolution of their organizational mission and landscape assessments, the development process of the roadmap, efforts to gain global consensus, and investor initiatives. The presentation highlighted the need for patient organizations to act as both leaders and collaborators in the roadmap creation process for the highest level of success.  

Mission Statements and Strategic Plan 

As patient organizations evolve and mature, so do their goals and objectives. Conversations with stakeholders—such as patient communities, other advocacy and industry organizations, and the scientific community—alongside progress in scientific discoveries and treatment options, can necessitate the development of altered organizational mission, objectives, and research strategies. 

Cyndi Zagieboylo, president and CEO at the National MS Society, described how its mission has changed over time as the organization progressed. In its landscape assessments, leaders realized that people have differing definitions of “cure,” which are often based on their individual experience with the disease. For this reason, the National MS Society was hesitant to add the word “cure” as part of its 2021 mission statement. Following stakeholder convenings and efforts to gain global consensus on disease treatment goals, the National MS Society became more declarative and assertive in its mission, stating in 2022 that it would cure MS and empower those affected by the disease to live their best lives. Out of that mission, the presenters noted four specific focus areas: 

• Improve access to personalized, affordable, high-quality MS health care 

• Empower people affected by MS to solve everyday challenges 

• Accelerate cures through global leadership 

• Strengthen the MS movement through more and deeper connections 

Landscape assessments are a crucial first step for patient organizations hoping to establish concrete objectives and action plans. Out of these assessments, organizations can fully appreciate the needs and wants of the affected community. Using these findings, patient foundations can develop specific targets and implementation strategies to achieve such targets, which can help establish an organizational mission statement that is clear and actionable to the communities they aim to serve.  

Pathways to Cures Research Roadmap 
Upon establishing an articulate mission statement and list of associated objectives, patient organizations are in a position to develop strategic plans for achieving such goals. Bruce Bebo, the executive vice president of research at the National MS Society, outlined the organization’s Pathways to Cures research roadmap. The roadmap represents a strategic plan that identifies areas of considerable opportunity within MS research while outlining a plan to accelerate progress toward cures for MS. 

The roadmap took four years to complete—due in part to challenges associated with the COVID-19 pandemic—and was developed utilizing input from key advisory groups including its scientific advisory committee, national board of directors, and dozens of scientific MS experts around the world. The National MS Society also partnered with a TRAIN member, the Accelerated Cure Project for Multiple Sclerosis, to engage with hundreds of people affected by MS. This process represents a method of stakeholder consultation that can be used by other patient organizations. In creating the Pathways to Cures research roadmap, the National MS Society realized the need to change its mission articulation from the singular “cure” to the plural “cures” to address the varying goals within the patient community. The team discovered three distinct cure pathways: 

1. Stop MS in its tracks (defined as no disease progression) 

2. Restore lost function (defined as regaining lost function) 

3. End MS forever (defined as no new diagnoses and prevention of MS) 

For each cure pathway, the National MS Society developed graphics and visual content that can be easily understood by a diverse, non-scientific audience. The content was used to create a Pathways to Cures webpage to circulate the roadmap plan to a wider audience. Additionally, it published the roadmap in the Multiple Sclerosis Journal due to its global reach and ability to disperse it to the greater scientific community. In an effort to reach a more broad and diverse population to further increase awareness, the National MS Society paid for open access of the publication. Removing access barriers and dispersing materials to diverse groups can foster further innovation and lead to more equitable research.  

As patient organizations develop roadmaps to move closer toward their stated mission and achieve their organizational objectives, it is imperative to develop coinciding implementation strategies and initiatives to garner support from key investors. The National MS Society developed a Pathways to Cures playbook with specific plans and activities to advance the cures pathways. Bruce Bebo defined the National MS Society’s major implementation strategies as: 

1. Convening activities and utilizing their influence and credibility as global thought leaders 

2. Advocacy efforts including activities that result in increased investments in MS research by other agencies 

3. Education, communication, and awareness functions to help create more momentum and lead to more collaboration 

4. Prioritization of MS research for cures 

5. Research and workforce investments 

Stakeholder Groups Engaged with Roadmap 

1. Investors: The playbook is a critical asset for the National MS Society to involve investors, providing an opportunity to engage investors with a clear idea of the overall scope of work and encourage investments that are not limited to a specific project.  

2. NIH: Along with gathering a key group of investors, the National MS Society has worked to engage important stakeholders and agencies in the research roadmap creation process. It extended invitations to the National Institutes of Health (NIH) and had the director of the National Institute of Neurological Disorders and Stroke (NINDS) attend and speak at some of their meetings. The team pointed out, however, that the NIH is in the process of advancing research for thousands of diseases and is cautious about supporting any single organization over the others it works with. Nonetheless, they spoke of the importance of including the agency in their work.  

3. Industry: For well-established pharmaceutical companies in the MS space, the National MS Society shared the Pathways to Cures with their corporate partners and provided them the opportunity to relay input and feedback on the research roadmap.  

4. Department of Defense: In addition to engaging these groups for support, the National MS Society has seen an acceleration in MS research due to MS being incorporated into the work of the Department of Defense (DoD). Tim Coetzee, chief advocacy, services & science officer at the National MS Society, explained that for a disease to be incorporated into the work of the DoD, patient organizations need to find ways to connect their disease to a military service component, have congressional champions, and be persistent with their advocacy efforts over many years.  

5. Other MS Organizations: The National MS Society sought endorsements of the Pathways to Cures roadmap from other MS organizations in the United States and around the world. The organization’s leadership believed that it was vital to bring the world together to focus on how to achieve cures. To date, more than 30 organizations have endorsed the vision expressed in the roadmap.  

Conclusion 

The National MS Society leadership team stressed the roadmap as a starting point through which dialogue with other disease organizations can begin, thus leading to improved coordination of research investments and collaboration. This coordination must include a global component, as cures do not exist in a national bubble but are best realized when organizations draw from their individual strengths and work toward a common, international objective. Examples and methodology drawn from the roadmap can be scaled up or down by other patient organizations looking to establish a clear and functional strategic plan for their disease advocacy and research community. It requires a group of committed leaders, qualified scientists and researchers, peer-to-peer collaboration, and, most importantly, bringing patients into the conversation in a meaningful way.