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
The titinopathies were featured in the May 2024 MDA Quest magazine. Here’s an excerpt from the article: “Can you tell us about titinopathies and the gene that causes them? We currently know of more than 10 different muscle disease types in the group of titinopathies, which can cause disorders both severe and mild, from prenatal … Read more
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
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
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
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
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
SCIENTIFIC PEER REVIEW OF CONGRESSIONALLY DIRECTED MEDICAL RESEARCH PROGRAMS’ PEER REVIEWED MEDICAL RESEARCH PROGRAM FOR THE DEPARTMENT OF DEFENSE The Congressionally Directed Medical Research Programs’ (CDMRP), Peer Reviewed Medical Research Program (PRMRP) consumer advocate Sarah Foye, an advocate for Team Titin, recently participated in the evaluation of research applications submitted to the PRMRP. Foye was … Read more
November 29, 2021 by Holger Fischer and Sarah Foye ZNM – Zusammen Stark! e.V. ,Team Titin, and the Foye Family have joined forces to better understand muscle diseases caused by changes in the TTN gene, which are called titinopathies. A joint grant of 50,000 Euros has been awarded to Dr Anna Sarkozy, MD, PhD and … Read more
Let’s face it, for families who face chronic health conditions life doesn’t always go to plan. Over the years, my family has faced many decision points due to unexpected events like illness or medical issues. I was recently helping a friend talk through a necessary pivot when I realized we had developed “Pivot Principles” over … Read more