Welcome to Team Titin!

If you are reading this you have likely been told you have a variant in the titin (TTN) gene that may be the cause of a muscle or heart disorder.  Please know that you are not alone!

Getting a clear diagnosis of a titin related muscle or heart disorder can sometimes take a long time.  Please know that there are other people on a similar journey.

You can connect with other families experiencing something similar on Facebook through either:

  1. Our public Facebook page here: https://www.facebook.com/TeamTitin or
  2. In our private Facebook discussion group here: https://www.facebook.com/groups/teamtitin

Please note that the private discussion group is for affected individuals and their families only.

Contact a Titin Advocate for more information:

Sarah Foye curemyopathy@gmail.com (973) 797-9305

Fact sheet about recessive titinopathy click here.

What is LGMD from the MDA click here.