At Team Titin, our mission is clear: supporting individuals and families affected by titin (TTN)-related muscle and heart disorders through connection, care, advocacy, and research. 2024 has been an incredible year of growth, achievements, and impactful initiatives that brought us closer to our goal of improving lives and advancing treatments. Here’s a recap of what we accomplished together.
Strengthening Connections
Our community is growing stronger each year! In 2024, we saw a remarkable increase in participation and engagement:
- Registry Growth: Our CMDIR.org registry now includes 156 affected individuals, a 3% growth.
- Newsletter Subscribers: We welcomed 94 new subscribers, bringing our total to 418—a 29% jump.
- Social Media Impact:
- Facebook private group members increased by 43% to 570.
- Instagram reach skyrocketed by 216%, with over 400 new interactions.
- Our YouTube views more than doubled, reaching 2,631, alongside an 86% increase in subscribers.
- Over 1,800 new users explored our website, titinmyopathy.com, this year alone.
Advocacy Milestones
We aim to represent the collective voice of our community. We took significant strides in policy advocacy and partnership development, including:
- Consulting with experts and laying the groundwork for an ICD code application in 2025.
- Partnering with leading organizations such as the DCM Foundation, National Organization for Rare Disorders (NORD), Global Genes, and the Global Heart Hub.
- Actively participating in advocacy efforts like the MDA Neuromuscular Advocacy Collaborative and the EveryLife Foundation online meetings.
Empowering Care Initiatives
Access to the best care today sets the foundation for tomorrow’s treatments. This year, we:
- Updated resources and care guidelines on platforms like NORD and the MDA website.
- Supported families with resources on family planning and connected them with global experts for variant interpretation.
- Participated in awareness campaigns, including Rare Diseases Day and Genetic Cardiomyopathy Awareness Campaign.
- Joined global collaborations like the European Neuromuscular Center meeting “Congenital myopathies: revising and revisiting nomenclature and diagnostic guidelines” in June.
Advancing Research
We’re committed to advancing treatment through funding, clinical trial readiness, and global collaboration. Key accomplishments in 2024 include:
- Funding groundbreaking research, such as:
- A $50,000 grant to Isabelle Richard at Genethon for creating skeletal muscle organoids from TTN patient cells.
- Co-funding the TREATIN Titin Natural History Study with ZNM – Zusammen Stark!
- Supporting genetic research with Jennifer Roggenbuck, MS, LGC at Ohio State on TTN myopathies with the Silvey Family Foundation.
- Co-hosting international case conferences and expanding our scientific publication library.
- Actively collaborating with researchers and clinicians through events like the MDA scientific & clinical conference, fostering innovation and knowledge sharing.
Looking Ahead to 2025
The future is bright, and we’re already gearing up for another impactful year:
- Co-hosting our scientific & family conference, SciFam, in Philadelphia, PA, USA August 1-5
- Continuing grant funding to support innovative research.
- Representing our community at major conferences, including the MDA and LGMD conferences in 2025.
- Exploring new therapeutic approaches with leading experts.
Thank You to Our Community
Our 2024 achievements were made possible by the unwavering support of our community—affected individuals, families, researchers, clinicians, and partners. Together, we’re making strides toward a brighter future for those impacted by TTN-related conditions.
Stay connected with us on social media, including Facebook Facebook.com/TeamTitin and at TitinMyopathy.com to continue this journey.