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Strategic Plan 2024-2027

Welcome

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.

  1. Increase Education
  2. Build Committee
  3. 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

  1. Distill scientific materials into easy-to-understand resources so families feel empowered with knowledge about CHD2-RD and what to expect.
  2. Create or update educational materials about CHD2, including materials for newly diagnosed patients, CHD2 clinical guidelines, what to expect, and more.
  3. Translate materials into multiple languages with the goal of increasing access to information about CHD2.
  4. 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

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

Accelerate Research

Accelerate research in CHD2-Related Disorders

  1. 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.
  2. Organize an annual research Meeting of the Minds that facilitates cuttingedge research discussions and drives research and collaboration forward.
  3. Engage the CHD2 community in research opportunities and become more clinical trial ready.
  4. Facilitate clinical guidelines for CHD2 to help understand which medications and therapies are most effective.
  5. 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.
  6. 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!

Subscribe to our Newsletter

Receive CHD2 news straight to your inbox
www.curechd2.org/signup-newsletter


Join our Facebook Support Page

www.facebook.com/groups/chd2support 
Meet other families, share stories, and receive support and information

We need you! Please register your loved one with us so we can speed up the pace to find a cure for CHD2-related disorders Register Here