General

Attention All Stakeholders: The Scientific & Family Conference for Congenital Muscular Dystrophy, Nemaline Myopathy, and Titinopathy

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Advancing Research and Care in the Congenital Muscular Dystrophies (CMD), Nemaline Myopathy, and Titinopathy – Join Us at the 2025 SciFam Conference (SciFam.info) April 15, 2025: Cure CMD, A Foundation Building Strength, and Team Titin are thrilled to announce the return of the highly-anticipated 2025 Scientific & Family (SciFam) Conference, taking place August 1–5, 2025 … Read more

2024 Highlights: Team Titin’s Year of Connection, Care, Advocacy, and Research

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2024 Team Titin accomplishments and priorities for 2025.

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 … Read more

The Silvey Family Foundation and Team Titin Join Forces to Fund Titin Research

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Team Titin and The Silvey Family Foundation are funding research to understand how harmful changes in the TTN gene affect muscle function in the heart and body. This research is being conducted by Jennifer Roggenbuck, MS, CGC, Professor of Neurology at The Ohio State University Wexner Medical Center, along with collaborators at The University of … Read more

Team Titin Funds $50,000 grant

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Team Titin is a nonprofit organization with the mission of serving those living with, caring for, or researching titin (TTN) related muscle and heart disorders. Team Titin is excited to announce our first research grant funding award to Dr. Isabelle Richard, PhD (Principal Investigator, Head of the Progressive Muscular Dystrophies Laboratory at Genethon), in collaboration … Read more

2024 Team Titin mission and strategic goals

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With the start of the New Year it’s time to consider our goals and mission. Read more for details. Team Titin, Inc.’s mission is to serve those living with, caring for, or researching titin (TTN) related muscle and heart disorders. To achieve this mission, we focus on four key pillars: Connection, Advocacy, Care, and Research. … Read more

2022 GivingTuesday

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On November 29, 2022, people all around the world are coming together to tap into the power of human connection and strengthen communities and change our world. Will you be one of them? Team Titin will be participating in GivingTuesday and we need your help! Our mission is to serve those living with, caring for, … Read more

Nonprofit status for Team Titin!

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We are so excited to share that Team Titin, Inc. was officially approved as a 501(c)(3) nonprofit corporation! Team Titin’s work had previously been achieved via fiscal partnerships with other nonprofits. We are SO grateful for our supportive partnerships since 2006 with Cure CMD, the Joshua Frase Foundation and more. Having this new status will … Read more

SciFam: Team Titin’s Family + Clinician + Researcher conference!

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Registration is now open for the 2022 SciFam conference! This is an opportunity for individuals affected by titin related muscle and heart disorders and their families to connect with experts. Team Titin has partnered with the Cure CMD and A Foundation Building Strength to offer a fantastic program, including Kids Camp. The family conference starts … Read more