In November, iConquerMS hosted its annual Summit, bringing together the iConquerMS community and other key MS stakeholders for a virtual discussion on the strategic direction of iConquerMS. This theme of this year’s event was Research for All: Making an Impact Together. The guiding question driving discussions was: How can iConquerMS continue to transform MS research, ensuring that everyone affected by MS who wants a meaningful role in research has the opportunity to participate?

The iConquerMS Summit is a dynamic two-day facilitated workshop uniting MS community partners to tackle key initiatives. Unlike typical presentation-focused events, it fosters collaborative discussions across disciplines. For the past decade, this ACP flagship conference has set patient-centered priorities for ACP and its partners.
Attendees
The 2024 iConquerMS Summit gathered together a diverse group of 80 individuals. Attendees included people with MS (40%), members of the iConquerMS governance and other iConquerMS activities (34%), researchers (7%), advocacy leaders (7%), caregivers (5%), healthcare providers (3%), industry leaders (3%), and funders (1%). Most participants were based in the United States, with the largest groups from the Mid-Atlantic, Southeastern, and Western regions.

“I’m excited about seeing the growth and progress of iConquerMS. Having the purpose and goals come together is inspiring!” – Person Living with MS, 2020 iConquerMS Summit
Day One -
What is iConquerMS? Where have we been and what are we working on now? This year’s attendees kicked off day one of the Summit by grounding themselves in iConquerMS’s core beliefs, vision and guiding principles.

Laura Kolaczkowski, Lead Patient Representative for iConquerMS, took us on a journey through the platform’s remarkable 10-year history, sharing powerful insights that celebrated its legacy and inspired a vision for the future.
For a small, but highly motivated organization, we really have accomplished a significant amount over the past 10 years. But, as we all know, this work is not done… The goal of iConquerMS has never wavered from day one. We are here to advance research that will be meaningful and impactful for people affected by MS. This Summit is your opportunity to help shape the next steps of where iConquerMS will go. – Laura Kolaczkowski
Sara Loud, ACP’s Chief Executive Officer, provided an enlightening review of the principles behind participant-powered research. The session flowed seamlessly into a dynamic Science and Engagement Fair, where attendees explored iConquerMS’s key focus areas through engaging presentations and interactive discussions.

Why does research for all matter?
MS affects everyone differently, making personalized treatments essential. Inclusive research helps uncover its unique impacts and addresses individual needs. When those living with MS shape research, it drives meaningful progress and accelerates breakthroughs. The ultimate goal is equal access to care and research, ensuring fairer healthcare for all.
What would research for all, guided by iConquerMS, look like?
At the heart of the summit was a vision of research for all – built on inclusivity, accessibility, and partnership. How can we create diverse opportunities for participation, empower those affected by MS as true research partners, and ensure equitable access to tools and support? Redesigning research to meet diverse needs is essential. How do we foster inclusive partnerships and drive ideas into funded studies that create real impact?
Summit attendees divided into small groups, or breakout sessions, to begin parsing out these important questions. Their first topic of discussion was what do we mean by research? Participants shared research activities that they have enjoyed.


The same groups were then asked to reflect on what do we mean by “all?” In other words, who needs to be included? Who is missing or not fully represented? How many voices still lack a seat at the table, and what work lies ahead to ensure everyone is included?
The third and final breakout session on day one put it all together. Participants shared ideas on the following questions: What does research for all mean to you and what emerges when you think about it?

Day Two -
What future do we see for iConquerMS as we work toward solutions for MS? Day two kicked off with breakout sessions focused on bringing the vision of participant-powered research to life. Below are the four guiding questions, along with a summary of the ideas they sparked:
How do we expand and tell the story of what participation in research can be?
Research can feel intimidating. Historically, lack of trust and strict eligibility have limited participation. To encourage participation, we need to offer comfortable entry points, such as simple surveys or data sharing, that are noninvasive and empowering. Expanding and sharing the story of iConquerMS can help people feel more at ease. Overcoming barriers involves improving understanding, building trust and ensuring inclusivity. Research materials should be available in multiple languages and accessible literacy levels, with communication coming from within the community to foster trust.

How can we reach people so they understand what is possible for them?

To reach people effectively, we must tailor outreach to diverse needs, using in-person strategies, especially in smaller or underserved communities. Partnering with advocacy groups can raise awareness about opportunities like clinicaltrials.gov, iConquerMS, and National MS Society programs. It’s also crucial to advocate for older adults with MS, ensuring they have access to research opportunities. Sharing research results in clear, actionable ways helps people stay engaged. Reaching younger audiences through platforms like TikTok and addressing barriers like health literacy ensures inclusivity. Outreach efforts should be flexible and focus on building trust and understanding.
How can we encourage the research and care communities to see people with MS as key drivers of research?
Advancing participant-powered MS research requires engaging both professionals and people with MS. Presenting at conferences and publishing in journals highlights its value, while encouraging people with MS to share their stories amplifies their voices and normalizes their role in research. Introducing patient-centered research early in investigators’ careers highlights its benefits and fosters collaboration. Rethinking exclusion criteria ensures inclusion of diverse groups, like older adults or those with coexisting conditions. iConquerMS can grow through word-of-mouth (by inviting friends, family, and others with MS to join). Partnering with people with MS helps shape research that truly reflects and benefits the entire MS community.

What additional partnership might we need to increase the “All”?

To make research more inclusive, we need to rethink strict practices like age limits, allowing older adults without major risks to participate. Partnering with pharma, healthcare providers, and MS organizations can expand outreach to underserved groups, while tools like welcome kits at clinics can connect more people to programs like iConquerMS. Stronger advocacy and support systems can help people with MS navigate decisions, and surveys within iConquerMS can identify unmet needs to guide funding. By addressing challenges and fostering collaboration, we can create initiatives that truly support the MS community.
Summit attendees were challenged to expand on these ideas via Open Space technology. Virtual discussion “rooms” were formed (each with a host) based on topics that participants wanted to explore further. Individuals were able to move between the rooms and talk about how we might make each one possible (identifying next steps needed to achieve these goals).

Here’s what we discussed!
Social Determinants of Research Participation – The barriers to research often overlap with the social factors that impact care. By addressing these social determinants of health, we can increase awareness and participation in research.
Proposed next steps –
- Social workers can help researchers understand community needs
- People from the community can help conduct research using their local knowledge
- Use pharmacies and community health centers to help spread the word
- Identify when technology helps and when it hinders
Dissemination and Implementation – Increase access to disease-modifying therapies by identifying needs and sharing relevant research.
Proposed next steps –
- Link community providers to experts and resources to speed up diagnosis and treatment
- Help people with MS and providers navigate insurance barriers for better treatment access
- Empower people with MS to educate themselves using trusted sources like iConquerMS
- Engage with the community through local events, or by reaching out to support group or church leaders
Spread awareness of iConquerMS – Launch new campaigns to promote iConquerMS, highlighting its benefits and making joining exciting.
Proposed next steps –
- More involvement/representation in support groups
- Share stories on social media and encourage the community to share how they conquer MS
- Add a webpage where people can order promotional materials to share
- Create an outreach team to find new opportunities to promote iConquerMS
Aging in MS – Many people with MS are diagnosed later in life but are excluded from research due to age limits, leaving a substantial information gap.
Proposed next steps –
- Show researchers iConquerMS data to highlight the importance of including this age group
- Exercise can help manage many factors that exclude older adults from research
- Share how lifestyle changes can help manage conditions and enable participation in research
- As people live longer, we must rethink our approaches and make necessary changes
Reaching newly diagnosed people with MS – Exploring ways to connect with newly diagnosed MS patients and inspire them to engage in research as a way to help themselves, others, and regain a sense of control.
Proposed next steps –
- Determine if highly engaged iConquerMS members are newly diagnosed, what attracted them, and use that insight to reach others
- Develop a peer program for iConquerMS to support newly diagnosed individuals
- Create resources for healthcare providers to share with people newly diagnosed with MS
Find ways to collect more samples and create additional opportunities for research participation – There was a strong desire from Summit attendees to contribute to research and help advance the field.
Proposed next steps –
- Consider reengaging past donors for comparison
- COVER-MS was a successful pilot, receiving excellent feedback
- Address concerns about data leakage
- Ensure participation is open to all, without barriers, including all types of MS and age groups
Personal stories are impactful – how do we share them? Now is the time to share real-life experiences of living with MS through iConquerMS.
Proposed next steps –
- Follow up with iConquerMS participants to gather their experiences and share the results
- Create training and guidelines for sharing stories, offer content in multiple languages
- Use various methods, including social media
- Assign an iConquerMS member as the main contact for researchers to share results
How do we figure out where to put our energy first? People with MS want to feel empowered and valued, but their time and energy are limited. How can iConquerMS provide opportunities for them to participate in ways that make their contributions feel meaningful?
Proposed next steps –
- Connect with leaders of other MS organizations to broaden networking efforts
- Plan short-term and long-term goals to focus efforts
- Create a resource guide for newly diagnosed individuals to provide support and guidance
- Feature an MS spokesperson on the iConquerMS website to explain why and how people with MS can participate in research
The iConquerMS Summit is a celebration of the work being done through the initiative in partnership with its stakeholders. Participants strengthen relationships with each other and it is through these connections that good ideas and solutions emerge. Sara Loud summed it up nicely with her closing words, “You spent two amazing days with us and generated so many ideas that are actionable and designed to move things forward. I know we can incorporate them into our work to accelerate research that really and truly matters.” The Next Steps Committee is energized to take the lead, with the iConquerMS Project Team driving initiatives forward. The Project Team will assign staff and volunteer leaders to specific projects, ensuring momentum continues after the Summit. We look forward to an exciting and productive New Year! Stay tuned!
