🧭 YOU ARE HERE
Where the Journey Begins
Families affected by congenital melanocytic nevi (CMN) often begin their journey without a clear map: facing uncertainty, unanswered questions, and limited coordinated research.
Progress is possible.
But progress requires a plan.
This Research Roadmap shows how donor support over the next 18–24
months helps Nevus Outreach build the infrastructure needed to move CMN research forward thoughtfully, responsibly, and toward real-world impact.
Each stop on the map represents work your gift makes possible.
🗣️ FIRST THINGS FIRST
Building the Lines of Communication
📍 1. Strengthening Community Connections & Communication
Timing: 2023-2025
What your support has already made possible:
Your gifts helped Nevus Outreach strengthen and expand the ways we connect with our community by:
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Growing and clarifying our membership base
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Launching and expanding The Dotted Line (TDL)
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Increasing engagement across all platforms with storytelling
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Strengthening and segmenting email communications
This work allowed us to better understand who our community is, where they are, and how to reach them.
Why it matters:
Research cannot move forward without a clearly defined and connected community. Strong communication channels ensure families are informed, engaged, and able to participate meaningfully in what comes next.
🚗 TRAILHEAD
Fueling the Journey
📍 2. Dedicated Staff to Drive Research Forward
Timing: Sept 2025- February 2026
What your support makes made possible:
Your gift supports the people who keep this journey moving every day: coordinating research priorities, managing partnerships, and ensuring progress continues between milestones.
We transitioned Danielle Bestoso, MSc, PMP to a Research and Industry Relations part-time role in 2025 and Dr. Maggie Mangold joined Nevus Outreach staff in February 2026 to serve as our part-time Registry Coordinator and lay the groundwork for robust student engagement.
Why it matters:
Research doesn’t move forward on its own. Dedicated staff are the engine that turns plans into action and keeps momentum from stalling.
➡️ SETTING THE DIRECTION
📍 3. Physician Advisory Board
Timing: Spring 2026
What your support makes possible:
Donor support allows Nevus Outreach to convene a Physician Advisory Board of experienced clinicians who help guide research priorities, offer real-world clinical insight, and align efforts with future regulatory and industry expectations.
Why it matters:
Early physician leadership ensures research stays grounded in patient care and builds credibility from the start.
🌱 SCENIC OVERLOOK
Where Stories Become Science
📍 4. A Patient Registry
Timing: 2023-2026 to launch and iterate; 2026+ to collect and analyze data
What your support makes possible:
Your gift helps build and sustain a patient registry that empowers families to share their lived experience, captures natural history data, and lays the groundwork for future clinical trials.
Why it matters:
Registries are the backbone of rare disease research. They turn individual stories into data that researchers can act on.
🗺️ GATHERING POINT
Sharing the Road
📍 5. Symposia & Scientific Convenings
Timing: July 2026
What your support makes possible:
Donor funding brings together researchers, clinicians, industry partners, and the CMN community to share progress, align priorities, and define next steps.
Why it matters:
Breakthroughs don’t happen in isolation. Convenings accelerate collaboration and prevent dead ends.
🔍 LEARNING THE TERRAIN
📍 6. Helping Our Community Understand Drug Development
Timing: Ongoing
Your gift supports education that helps families understand:
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How drug development works
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What clinical trials are- and are not
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Why timelines are long and milestones matter
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Where patient voices influence outcomes
Why it matters:
When families understand the terrain ahead, they can participate confidently and advocate effectively without fear or misinformation.
🎓 INVESTING IN
THE NEXT GENERATION
📍 7. Engaging Medical Students & Early-Career Clinicians
Timing: 2025+
What your support makes possible:
Donor funding supports engagement with medical students and trainees, including the Kathy Stewart Memorial Fellowship, helping introduce CMN early in medical education and build long-term interest in care and research.
Why it matters:
Tomorrow’s breakthroughs depend on today’s learners.
🧱 STABLE GROUND AHEAD
📍 8. Data Integrity & Responsible Access
Timing: 2025+
What your support makes possible:
Strong data practices protect families, build trust, and ensure research is rigorous and credible.
Why it matters:
Tomorrow’s breakthroughs depend on today’s learners.
🏕️ TRUSTED
STOPS ALONG THE WAY
📍 9. Centers of Excellence
Timing: 2026-2027+
What your support makes possible:
Donor support helps lay the groundwork for clinical hubs where patients receive coordinated care, participate in research, and follow standardized protocols that improve consistency and outcomes.
Why it matters:
Centers of Excellence strengthen both care and research—reducing variability and improving quality.
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❤️ WHY THE JOURNEY MATTERS
📍 10. Patient-Centered
Research Priorities
Timing: 2026-2028+
What your support makes possible:
Your gift ensures research priorities are shaped directly by patients and caregivers—focusing on the questions families actually live with.
Why it matters:
Research should answer what matters most, not just what’s easiest to study.
🤝 PARTNERS ON THE PATH
📍 11. Pharma & Industry Engagement
Timing: 2026- 2027+
What your support makes possible:
Donor investment helps Nevus Outreach build relationships with biotech and pharmaceutical partners, share patient-driven priorities, and position CMN research for collaboration and investment.
Why it matters:
Industry engagement is essential for moving therapies from research into reality—and it requires a prepared, credible patient partner.
🧪 THE NEXT CLIMB
📍 12. Supporting Early Clinical Trials
Timing: 2027+
What your support makes possible:
As the foundation comes together, donor support helps prepare for and support early clinical trials—assisting with readiness, participation, and gaps not covered elsewhere.
Why it matters:
Clinical trials are where research begins to translate into real-world impact for patients.
🧭 THE BIG PICTURE
📍 12. Supporting Early Clinical Trials
When you support this roadmap, you’re not funding a single project.
You’re helping build the infrastructure that allows CMN research to move forward—mile by mile, step by step.
This is how uncertainty becomes direction.
We've been changing lives since 1997
In the past 27 years, Nevus Outreach has achieved amazing things. We support a global community with members in 33 different countries and 6 continents. We raise our voices for equality and advocacy for those with rare conditions like CMN and NCM. We are a founding partner of the Nevus Owners Outcomes Registry (NOOR), where we hope to further research and improve the health and well-being of all those affected by CMN, NCM, and related conditions.
Will you help us continue our vital work?
Learn More about Nevus Outreach
