Team Titin

06/01/2026

06/01/2026

Sometimes, the first clue is not a symptom - it’s a story.
A parent who developed heart problems unexpectedly.
A relative with unexplained fainting, shortness of breath, or irregular heart rhythms.
A sudden cardiac event that no one fully understood.
Cardiomyopathy is a disease of the heart muscle that can affect the heart’s ability to pump blood through the body. It can affect people of all ages and may be passed down genetically.
For the Team Titin community, knowing your heart history matters. Changes in the TTN gene can be associated with heart conditions such as cardiomyopathy, atrial fibrillation, and arrhythmias. Understanding patterns in your family may help you ask new questions, identify possible risks, and take action earlier.
This June, Team Titin is proud to join Global Heart Hub for Cardiomyopathy Awareness Month.
Talk to your family. Share what you learn with your doctor. Ask whether your heart history could matter.
Think Cardiomyopathy. Know Your Heart History.
Learn more: https://titinmyopathy.com/think-cardiomyopathy/

05/31/2026

Team Titin is grateful to have attended and helped sponsor the Tucson Myofilament Meeting, where experts from around the world gathered to discuss “What’s hot in myofilament structure, elasticity and regulatory networks in muscle function and disease.”

It was especially meaningful to meet so many titin experts in person and to learn from researchers advancing our understanding of TTN-related muscle and heart conditions, as well as the broader field of myofilament biology.

Many thanks to Dr. Henk Granzier for organizing this outstanding meeting, and to all the dedicated researchers and clinicians whose work continues to move the science forward.

We are leaving inspired, encouraged, and deeply appreciative of this incredible scientific community.

05/31/2026

Team Titin was thrilled to help sponsor and attend the 2026 Myofilament Meeting in Tucson. We met so many dedicated and brilliant titin experts focused on, "What's hot in myofilament structure, elasticity, and regulatory networks in muscle function and disease."

05/29/2026

Do you have questions about how clinical trials work and how to participate as a patient or caregiver with a rare disease? Join our webinar for answers.

RSVP now and submit your questions in advance: https://bit.ly/42U9OS6

Sponsored by Alexion Pharmaceuticals

05/29/2026

Exciting news!

The date is locked in for LGMD2I/R9.

The FDA has accepted our NDA for BBP-418 for LGMD2I/R9 and set a PDUFA target action date of November 27, 2026, the date by which the FDA will complete its review.

LGMD2I/R9 is a progressive, life-shortening disease with no approved treatments. If BBP-418 is approved, it would be the first for LGMD2I/R9, and potentially for any form of .

For a community that has lived with no approved treatment options, timing is everything. We're racing toward potential approval and preparing for launch so that those with LGMD2I/R9 can be reached as quickly and safely as possible.

05/28/2026

📣 Coming soon: June is Cardiomyopathy Awareness Month ❤️
Team Titin is proud to partner with Global Heart Hub for the 2026 campaign:
Think Cardiomyopathy: Know Your Heart History
For the titin community, this message is especially important. Disease-causing changes in the TTN gene can be linked to a spectrum of heart conditions, including cardiomyopathy, atrial fibrillation, and irregular heart rhythms.
This June, we’ll be sharing information to help families recognize heart history patterns, ask questions, and seek care earlier.
Stay tuned - the campaign launches June 1!

05/27/2026

If you live in the US, are over age 18 and have an eligible heart health condition, you may be eligible to participate in an observational study that you can do from HOME called, "Study of the Progression of Chronic Cardiovascular Conditions (OCORO)"
The study takes about 5-10 minutes a week and can be done from the comfort of your home.
Enroll here: https://www.prolaio.com/heart-study

05/21/2026

The Genetic Cardiomyopathy Awareness Consortium hosted an educational webinar on May 20, 2026 about wearable devices, heart data, and what these tools may help us learn about living with a heart condition. The webinar discussed what devices are currently being used and what types of data that they collect.

This recording also shares an overview of the OCORO Heart Study, a remote research study for people living with heart conditions. The goal of the study is to help researchers better understand how heart conditions change over time in real life. Participation is done from home, and the study is observational only, meaning there are no drugs, procedures, or clinic visits involved. Dr. Greg Kurio explains what taking part may look like, who may be eligible, and how to learn more.

Presenter: Greg Kurio, MD, Cardiologist and Principal Investigator, OCORO Heart Study

Two patient advocates also joined the conversation: Hannah Keime, Co-Founder of HeartCharged, and Walker Frahm, CEO of the SADS Foundation.

Watch the recording here:

The Genetic Cardiomyopathy Awareness Consortium hosted an educational webinar on May 20, 2026 about wearable devices, heart data, and what these tools may he...

05/19/2026

Last chance to register! May 20 webinar focused on understanding wearables, heart data, and the OCORO Heart Study

We’ll talk about wearable devices, heart data, and what these tools may help us learn about living with a heart condition. We’ll talk about what devices are currently being used and what types of data that they collect.

We’ll also share an overview of the OCORO Heart Study, a remote research study for people living with heart conditions.

Registration is free and open to patients, caregivers, families, medical professionals, and anyone interested in understanding wearable devices and their role in potentially advancing cardiomyopathy treatment: dcmfoundation.org/upcoming-webinar/