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
What does LGMD Awareness Day mean to me? This year’s LGMD awareness day is an exciting and very important event! I’d like to take some time to express just how crucial this day of awareness is to each one us living with LGMD. September 30th is not just a date on the calendar anymore. It … 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
What is a Titin Myopathy? Terminology: “Titin Myopathy” versus “Titinopathy” How severe are Titin Myopathies?
This is a wonderful resource for families to learn more about getting the best care in a wide range of clinical areas. Click HERE for a PDF version of this document. The Care of Congenital Myopathy: A Guide for Families is a comprehensive care guide developed for families and people with congenital myopathy (CM) in response … Read more
Greetings families affected by titin related muscle and heart disorders. Our world is now facing the global health challenge of the Coronavirus pandemic (COVID-19). Please keep in mind that there are special considerations for people with titin health disorders, including carriers. Please see details below. Video update from Dr. A. Reghan Foley, Neuromuscular and Neurogenetic … Read more
New genetic technologies have made recent expanded diagnosis of titin related muscle and heart disorders possible. We are at the tip of the iceburg as far as these discoveries. That makes our families and researchers pioneers in the age of discovery in regards to titinopathies. Please check out this 3 minute video: