Strategic Plan 2024-2027

2025 Progress Report

Executive Summary

One year into our 2024-2027 Strategic Plan, CCC is proud to report that we are making strong progress and are on track with the commitments we set out. Across education, community, and research, CCC has achieved milestones and continues to build momentum. Within this report, you will see the specific updates and accomplishments tied to each of our strategic objectives.

Overall, we are proud of how far we have come in just twelve months. We are a small but powerful community! We are rich with ideas, expertise, and determination. The foundation has been laid, programs are underway, and collaboration across families, researchers, and clinicians is growing stronger every day.

In order to sustain and expand on this progress, we must build our organizational capacity by growing our funding base to secure additional resources; and welcoming more volunteers assist with the work.

CCC’s mission is to improve the lives of those affected by CHD2-related disorders by increasing education, building community, and accelerating research to uncover a cure; and the CHD2 community is our lodestar. Thank you for helping us find targeted therapies and improve the lives of all of our CHD2-affected families!

Our Strategic Objectives

Coalition to Cure CHD2’s three strategic objectives are outlined below. Each objective directly supports CCC’s mission and has shaped our priorities and actions throughout the past year. The following pages provide a detailed summary of key goals within each objective, highlighting the progress and impact achieved to date.

Increase Education
Build Community
Accelerate Research

Combined Summary

Across all three strategic objectives, CCC has made meaningful progress while also identifying the key barriers that must be addressed to sustain long-term success.

Under Strategic Objective 1, CCC has laid the groundwork for stronger family and professional education by developing tools to make science more accessible, advancing a multilingual family education packet, and planning future town halls. However, challenges such as limited time, and lack of volunteers continue to slow momentum.

For Strategic Objective 2, CCC has strengthened community engagement by welcoming new families, expanding outreach, and building pathways for global collaboration. The next steps include expanding the ambassador program beyond the DC/Maryland/Virginia community, deepening international partnerships, and creating more structured opportunities for connection. Limited bandwidth and evolving communication platforms remain barriers, underscoring the need for stronger resourcing and additional paid staff.

In Strategic Objective 3, CCC has advanced research priorities by refining its research plan, hosting the third Meeting of the Minds, and securing major grant funding and external support. Engagement through study promotion, biosample collection, and the disease concept model reflects strong community involvement. Looking ahead, CCC’s priorities include developing clinical guidelines, expanding SAB expertise, improving cross-committee coordination, and launching a natural history study in partnership with a major research center. Sustained fundraising and a clearer strategy for clinical and professional engagement will be essential to maintain momentum.

Overall, CCC has built a solid foundation across education, community engagement, and research. Continued focus on coordination, leadership, and resourcing will enable the organization to move from early progress to long-term, sustainable impact for the global CHD2 community. Families, clinicians, researchers, and supporters are encouraged to get involved, whether by volunteering time, participating in studies, joining committees, and/or contributing financially. Every level of engagement and every donation fuels the next step forward. Together, we can accelerate education, strengthen community connections, and drive the research that will shape a better future for all individuals living with CHD2.

Click below to download Strategic Plan Progress Report 2025

Three-Year Strategic Plan
(2024-2027)

Coalition to Cure CHD2 came together in 2020 when two mothers, Christine Salmi and Lauren Malko, were eager to help their children suffering from seizures associated with CHD2-related disorder (CHD2-RD). After finding each other, their hope was to connect with more patients and families who could join them in their vision for a cure. Their efforts led to what has become a global foundation, spanning over 40 countries and representing more than 300 CHD2 patients.

The understanding of neurodevelopmental disorders caused by genetic variants like CHD2 is expanding at a rapid pace. CCC is determined to not only keep up but to lead the charge towards a cure. Since its inception just four years ago, the growth of the foundation has been astounding, and CCC is now at an inflection point. In order to continue down the path of success, and to ensure that the mission and the needs of the community are being met, CCC developed its first three-year strategic plan.

Strategic planning is essential for the overall health and success of an organization, and it helps to build capacity and prepare for a sustainable future. The strategic objectives contained inside this plan also serve as a guide to keep the organization on track for
the next three years. This plan is informed by data collected through: 1) an internal organizational needs assessment 2) a community needs assessment with more than 140 respondents, and 3) an in-person strategic planning meeting attended by the Board of Directors. Results from the community needs assessment are available for public view on the CCC website. CCC’s first strategic plan is a critical document that provides a clear roadmap for CCC’s efforts over the next three years. It is also a call to action for our stakeholders to engage, collaborate, challenge, and propel CCC forward into the exciting future of CHD2-related therapies and, ultimately, a cure.

Warmly,
Board of Directors
Coalition to Cure CHD2

Our Strategic Objectives

Coalition to Cure CHD2's three strategic objectives are listed below. These objectives align with CCC’s mission and will guide the organization for years to come.

Increase Education
Build Committee
Accelerate Research

Key goals for each strategic objective are detailed in the next three pages. These goals provide additional detail on what CCC plans to achieve relative to each strategic objective.

Increase Education

Increase patient and professional education of CHD2-related disorders

Distill scientific materials into easy-to-understand resources so families feel empowered with knowledge about CHD2-RD and what to expect.
Create or update educational materials about CHD2, including materials for newly diagnosed patients, CHD2 clinical guidelines, what to expect, and more.
Translate materials into multiple languages with the goal of increasing access to information about CHD2.
Host webinars / town halls to update the community on research and other opportunities to get involved.

Build Community

Build an engaged and empowered CHD2 community

Welcome and support newly diagnosed families and provide them with tools that will help them navigate the diagnosis of CHD2-RD.
Create opportunities for families to tell their stories, get involved in the organization, and contribute to research.
Organize new, regularly scheduled virtual and inperson “Meet-Ups” for families.
Develop a new ambassador program to help us meet our goals and lead to expanded international outreach.
Increase community outreach through a communications plan that includes more regular updates to the community via newsletters, social media, and our website.
Identify new CHD2 patients across the globe.

Accelerate Research

Accelerate research in CHD2-Related Disorders

Develop a strategic research plan that will guide CCC’s research efforts in the most efficient way towards finding treatments and/or a cure for CHD2-RD.
Organize an annual research Meeting of the Minds that facilitates cuttingedge research discussions and drives research and collaboration forward.
Engage the CHD2 community in research opportunities and become more clinical trial ready.
Facilitate clinical guidelines for CHD2 to help understand which medications and therapies are most effective.
Expand our current Scientific Advisory Board to include a variety of professionals with diverse skill sets that can help CCC meet our strategic research goals.
Continue to fund meaningful research in CHD2-RD.

What’s Next from CCC

Over the next three years, CCC will use this strategic plan to guide our activities. Progress will be reported back to the community on an annual basis. Additionally, we will keep CCC’s membership upto-date through the communication channels below. Please keep an eye out, and be sure to subscribe!