ZNM – Zusammen Stark! e.V. and Team Titin fund study of titinopathy

Alliance to fund titin research

April 2, 2024 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

Team Titin Funds $50,000 grant

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

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

Genetic CardioMYopathy Awareness Consortium

Genetic CardioMYopathy Awareness

Did You Know? Approximately half of all patients diagnosed with cardiomyopathy in the U.S. have some type of genetic cause, while only about one percent of cardiomyopathy patients get genetic testing for their cardiomyopathy. Truncating variants in the TTN (titin) gene are the most common cause of inherited cardiomyopathy. The Genetic Cardiomyopathy Awareness Campaign was … Read more

2023 January – Focus on Wellness – Story 2

Journey to healing and becoming a life coach – coping with LGMD2J/R10 Wellness program starting Feb 1, 2023 by Amie Lee I’ll never forget the feeling of fear that washed over me when I received my diagnosis of Limb Girdle Muscular Dystrophy 2J. I decided knowledge was power, so I began searching anything I could … Read more

2022 GivingTuesday

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!

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

LGMD Awareness Day 2022

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

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

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