Annual Report for the Year Ending December 31, 2024

Message from the Board Co-Founders

2024 was a pivotal year of planning and preparation for the Chopra-Amiel-Gordon Syndrome (CAGS) Foundation, Inc. While the Foundation was officially filed in January 2025, the groundwork laid throughout 2024 helped define our mission, build our community, and connect with key researchers and advocates. Our collaborative efforts with families, researchers, and healthcare professionals have set a strong foundation for the road ahead.

You can learn more about this journey in our poster, CAGS: From Diagnosis to Foundation, presented at the RSZ TNC Symposium on Monday, September 23, 2024.

About the Foundation

The CAGS Foundation was officially formed effective January 15, 2025, and is dedicated to advancing the understanding and treatment of Chopra-Amiel-Gordon Syndrome worldwide. Our goals include connecting affected families, supporting research initiatives, and building a robust global network.

Family Support Initiatives

• CAGS Facebook Group: Support through a dedicated group where families connect, share experiences, and provide mutual encouragement.

• Global Network Expansion: Now reaching over 100 members across 14 countries.

2024 Highlights

• Poster Presentation: Presented "From Diagnosis to Foundation" at the Rosamund Stone Zander Translational Neuroscience Center (RSZ TNC) Symposium on Monday, September 23rd.

• Community Growth: Over 100 members in 14 countries.

• Research Initiatives: Ongoing collaboration with Dr. Maya Chopra at Boston Children’s Hospital on a natural history study of individuals with ANKRD17 variants (ClinicalTrials.gov ID: NCT05528744). Continued recruitment efforts expand participation.

• Global Network: Strengthened online presence, launched a LinkedIn page, and grew support through the families Facebook group.

Financial Overview

Note: As a developing organization, we are committed to financial transparency. Detailed financial statements will be provided in future reports as our financial activities expand.

Looking Ahead

In 2025, the CAGS Foundation aims to:

• Support Research Initiatives: Advance ongoing studies focused on CAGS mechanisms and potential treatments.

• Establish Governance: Develop the executive board, scientific advisory board, patient advisory committee, and other working groups.

• Fundraising Strategies: Launch strategic initiatives to support programs, research, and operations.

• Increase Awareness: Promote early diagnosis and awareness through targeted campaigns.

• Expand Social Media Presence: Grow our audience and engagement online.

• Enhance Donation Capabilities: Improve giving platforms and options for supporters.

How You Can Help

• Join the Study: Participate in the natural history study led by Dr. Maya Chopra.

• Connect with Us: Join our global network and help expand awareness.

• Support Research: Contribute to initiatives that move us closer to treatment and a cure.