Titin Myopathy 
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
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
As people focus on wellness in the New Year please enjoy this story about how one child with titinopathy found wellness and happiness doing adaptive fencing.
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
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