September is Limb-Girdle Muscular Dystrophy (LGMD) Awareness Month, and Team Titin is proud to partner with the LGMD Awareness Foundation to promote the inaugural Worldwide Girdie 5K Walk-Run-Roll for LGMD Awareness.
Team Titin serves individuals and families affected by TTN-related muscle and heart disorders. While many people associate TTN with congenital myopathies or cardiomyopathy, changes (variants) in the TTN gene can also cause one form of Limb Girdle Muscular Dystrophy (LGMD). Our community includes people living with many different TTN-related diagnoses – including congenital myopathy, distal myopathy, myofibrillar myopathy, cardiomyopathy, and LGMD. That makes LGMD Awareness Month an important opportunity for many members of our community.
Walk, Run, or Roll – Wherever You Are
The Worldwide Girdie 5K is a virtual event that brings together people across the globe to raise awareness for LGMD. Whether you choose to walk, run, roll in a wheelchair, or participate in another way that works for your abilities, every participant helps shine a light on these rare neuromuscular conditions.
The event welcomes:
- Individuals living with LGMD
- Families and caregivers
- Friends and supporters
- Healthcare professionals
- Researchers
- Advocacy organizations
Together, we can help increase awareness, encourage earlier diagnosis, support research, and strengthen the rare disease community.
Why Awareness Matters
LGMD is not a single disease – it is a group of rare genetic muscle disorders that cause progressive muscle weakness. More than 30 genes are known to cause different forms of LGMD, and TTN is one of them.
Because TTN-related LGMD is rare, many individuals experience long diagnostic journeys or may never have met another person with the same diagnosis. Awareness events like the Worldwide Girdie 5K help educate the public, connect families, and remind those living with rare diseases that they are not alone.
Why Team Titin Is Participating
Although many people associate titin (TTN) with heart conditions or congenital muscle disorders, some individuals with TTN variants are diagnosed with Limb-Girdle Muscular Dystrophy. We are proud to stand alongside the broader LGMD community in raising awareness, supporting research, and advocating for everyone affected by these rare neuromuscular diseases.
By partnering with the LGMD Awareness Foundation, we hope to increase understanding of TTN-related LGMD while supporting the shared goal of improving diagnosis, care, research, and community for everyone affected by LGMD.
Join Team Titin This September
We invite our Team Titin community to participate in this exciting inaugural event. Whether you register as an individual, create a team with family and friends, or simply help spread the word, your participation makes a difference.
Every step, stride, and roll helps raise awareness for people living with LGMD – including those whose condition is caused by changes in the TTN gene.
At Team Titin, we believe every person living with a TTN-related condition deserves connection, advocacy, care, and research. By joining the Worldwide Girdie 5K, you’re helping raise awareness not only for LGMD, but for everyone whose life has been impacted by rare muscle diseases – including those living with TTN-related LGMD.
We hope you’ll join us this September as we help make history during the inaugural Worldwide Girdie 5K Walk-Run-Roll.
Registration closes August 30, 2026.
Learn More and Register
Visit the Worldwide Girdie 5K registration page to sign up as an individual or create a team with family and friends:
https://www.lgmd-info.org/5k